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18 September 2016 @ 03:08 pm
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.
Geri Sullivan: Mohairgerisullivan on September 18th, 2016 11:00 pm (UTC)
Much love all around. May the hospice resources and support help ease the way forward.
billeyler: Angelbilleyler on September 18th, 2016 11:25 pm (UTC)
There was a little bit of joy in our getting together for a meal last Sunday, in spite of the difficulties. Kate was (as you said) much worse than I would have anticipated for this outing, but you all persevered.

I am always rooting for you two.

Thanks for making time.

Edited at 2016-09-18 11:26 pm (UTC)
gerryhuntman on September 19th, 2016 12:59 am (UTC)
Gosh my thoughts are with both of you
Kate Schaeferkate_schaefer on September 19th, 2016 01:58 am (UTC)

I'm grateful for the time and friendship for the past umpty years. We'll try to get to Portland for another helping, if we can.
wild_patiencewild_patience on September 19th, 2016 02:42 am (UTC)
We're so sorry to hear this. Love to you both.
Intelligentrix: Heart Yarnintelligentrix on September 19th, 2016 03:21 am (UTC)
I'm sorry this is still so very difficult, but glad that you are getting some help. It was wonderful to see the two of you at Wiscon and be able to sit down with you and laugh and hug. I very much look forward to the next time we see each other, all of us, whether here or in Portland.

Much love to both of you and know that I'm thinking of you.
Debbie N.wild_irises on September 19th, 2016 04:22 am (UTC)
My heart is with you both.
martianmooncrab: pic#59898509martianmooncrab on September 19th, 2016 05:50 am (UTC)
no words to say, its hard to ask for help, but you did right. Kate should have the best care now.
KMSvgqn on September 19th, 2016 05:53 am (UTC)
Our thoughts are with you as you navigate this difficult path. I hope hospice gives relief and freedom to both of you. Hugs!
fishlifter on September 19th, 2016 07:19 am (UTC)
We've been thinking of you both and send every good wish your way now. Hope the hospice care helps as much as possible and gives you better time together.
aneska_ on September 19th, 2016 07:34 am (UTC)
My best wishes for you and Kate.
eub on September 19th, 2016 08:51 am (UTC)
I know that has to be a difficult step to take for each of you. Thinking of you, and wishing you some love and some joy in each day.
eleyan: pic#18818884eleyan on September 19th, 2016 09:13 am (UTC)
We are thinking of you and sending good wishes your way. I hope the additional care will make things more manageable.
the laughing leaping waterminnehaha on September 21st, 2016 06:28 am (UTC)
All the kindliness in the world to you both.