Hospice #5

Hospice-to-regular Medicare back-to-Hospice – can be complicated
Medicare will pay many (if not all) expenses of patients enrolled in hospice. But, patients cannot be receiving hospice services and continuing to receive treatment services from his/her previous medical team – consultation, yes; treatment, no. In early August we gave up on my being physically able to do the biopsy to determine if I had the genetic structure to try Lynparza. We joined hospice on August 11.
On August 26 the chief sent us a test kit for the new biopsy-free method might give us the same information. We quickly signed the paper to “de-enroll” from hospice (August 29) and took the test kit to the hospital lab for processing. We did not realize that it be nearly a month before our “de-enrollment” paperwork would clear through the Medicare system. We also kept three previously made consultation appointments with the “old” medical team. You can imagine how many Medicare claims were denied in the 6 weeks following – all of which needed
calls to various providers in order to get them paid.
Lesson: if you must de-enroll from hospice, presumably for a defined period of time, be careful the billing depts. at your treatment providers are well aware.

Family visits
We were so happy when my sister Ginny called from Berkeley to say that she could come for a visit the weekend of October 23rd. Heidi and I enjoyed hearing about Ginny and husband Don’s trip to Portugal. She will return at Thanksgiving time to visit daughter and family. We are hoping to have another rendezvous then.

On a warm October 30th, we were visited by some spooks from Leesburg.

Happy Hallowe’en to all!

Love, Heidi and Bob

Local spooks - Lexi, Luke, and Kate

Local spooks – Lexi, Luke, and Kate

Ginny and Bob, September 24, 2016

Ginny and Bob, September 24, 2016

Hospice #1

This is the first post on our hospice experience. I think I’ll be publishing these more frequently because this is a new experience, and events may occur more quickly.

The lady who handles enrollment for all of this hospice’s clients in the metropolitan area came Saturday morning. When she asked what else we might need today, I told her I would like the catheter replaced ASAP. Who would imagine it would be my first request? She sent an e-mail, and the on-duty nurse arrived at 4 pm – wonderful relief. Good service!
Monday morning the case nurse and the social worker came. Dan (the nurse) explained how we could use the liquid morphine he had brought us. They each asked a number of questions to find out how things were going. We learned we would see Dan (the nurse) once a week and more often if he was needed.
We have been using Biofreeze a couple of times in 24 hours to soften the rib cage muscle pain I have been dealing with more 2 years. It has worked pretty well since this summer. We have also been taking a dose of the morphine in the evening for the last two nights. Tuesday night I slept with out pain but not soundly; I wonder if the morphine is causing that. Another question for Dan.
This weekend Todd, Paula and toddler Emily will be coming from Calfornia for a visit.I am really looking forward to seeing all three of them!

A disappointing change to summer plans

As predicted in the last post, at our appointment in late May the chief did again suggest trying Jevtana chemotherapy. Taxotere, the little brother of Jevtana, has surely helped to maintain control of my cancer burden these past five years. Nonetheless, I sense that my body has had enough chemotherapy. I feel I am no longer able to deal with the side effects of these “whole body poisonings.” I prefer instead to look for targeted treatments based on genetic analyses of my tumors. I’m not anxious to endure any more assaults on my remaining quality of life.
Among the things the chief discussed with us was the need for fresh samples of my tumor cells. Every intervention, such as the pair of rounds of chemo in December and January, is presumed to lead to modifications of the tumor cells. So, my NoVA oncologist ordered a new CT scan. The results were compared with those from the November 2015 scan. As the chief had predicted, the soft tissue tumors in my abdomen do appear to have migrated to my adrenal glands. (The adrenal glands are another source of “androgens”, think “cancer chow”.) The nodules on the adrenal glands showed some increase in size – but not yet enough to justify a biopsy for tumor samples.
For the first six months of this year my PSA has been meandering between 13 and 19 ng/ml. Now, every time I go for a blood test I think, “how much longer can this wonderful meandering last?” If it does continue for the next 4 or 5 months, we can then do another CT scan to see if the nodules on the adrenal glands have grown enough to biopsy. On the other hand, if PSA begins to climb rapidly once again, it will be time to scramble for    “Plan B.”
We have elected to stay close to home this summer. I just don’t feel strong enough for a long trip, such as the 800 miles to northern Michigan. We are very disappointed not to visit with our long-time friends in the Bay View summer community. If we have the opportunity to try one or both of the new targeted therapies, I would hope to gain the strength to be more adventurous next year.
We are still looking forward to a visit from the UK branch of our family. They will visit in mid-August after the twins finish school for the summer. Below is a picture of us with two of our Virginia grandchildren, Lexi and Luke.

Heidi and Bob with Lexi and Luke