Archive for September, 2016

Update on Kate 9/29

Kate is getting a little weaker every day. She can no longer get out of bed and is having even more difficulty communicating than before. She’s sleeping a lot, but her pain is under control. Her sister Sue is here for the duration, her parents are here right now, and my father will be coming this weekend.

We have been getting excellent support from hospice, with nurses, drugs, and equipment all just a phone call away. The social worker and chaplain (for some reason when I reach for the word “chaplain” I always get “cleric”) have been helpful with those difficult end-of-life conversations, and the home health aide comes by three times a week to give Kate a bath. Our third-party home health care provider is now sending someone for four hours every day and overnight every night. Everyone has been compassionate, skilled, and supportive.

Visitors are welcome, but please txt me before coming over, because the house is sometimes kind of crowded with health care people and sometimes she just needs a rest.

Thank you all very much for your support and good wishes.

Important update on Kate 9/18

I haven’t sent out a progress report in several weeks because there hasn’t been any progress to report. Kate has had two infusions of Avastin and has not been improving — in fact, she’s been getting worse. She is now extremely weak and, despite using the walker indoors and out, has been having falls and near-falls almost every day. The aphasia is also very bad, and there are other problems.

This has been extremely hard on me. I am not physically strong enough to pick Kate up by myself when she falls, and I’m having trouble maintaining the patience and compassion I need for all of the other caregiver tasks I have to perform. I am exhausted, and emotionally I’m near the end of my rope. I have been getting more help from in-home health care and friends, but it’s not really enough.

With all of this going on I called Dr. Lufkin for help Tuesday, and he got us in Wednesday morning. His assessment is that the Avastin is not really helping and could cause harm (it causes bleeding, which could be very bad in case she has a serious fall), so he recommends stopping it. Unfortunately, there are no other treatment options left. Avastin is the last FDA-approved treatment for recurrent glioblastoma, the Foundation One genetic tests didn’t turn up any additional options, and she isn’t eligible for any of the available clinical trials. Therefore, the next step is hospice care. Kate needed a little time to think it over, but she signed the paperwork on Friday.

Hospice doesn’t mean just waiting to die. Hospice means that a wide variety of at-home care services become available to make life easier for both of us. We have a dedicated team of nurse, social worker, chaplain, and home health aide, and access to other specialists from bereavement counselors to animal therapy. Any drugs or equipment we need will be delivered to the house on short notice, and it’s all covered 100% by our insurance.

There is explicitly no timeline here. Every patient is different and every tumor is different, so there’s no telling how long we have. With more support and a focus on comfort and in-home safety, she may actually live longer than she would have with treatment. Some patients remain on hospice care for a year or more. Some patients even come off of hospice care. We will just have to make the most of however much time we’ve got.

Thank you very much for your support and good wishes.