Kate passed away at 3:30 this afternoon. I was holding her hand, Sue was on the other side, and my father was with us as well as our friend Teresa E. Her passing was as peaceful as it could be. Thank you all for your thoughts and kind words.
Kate has basically been asleep for the last couple of days straight. She hasn’t been able to eat or drink anything, and can no longer swallow pills. We are now giving her only the most critical medicines, in forms that can be absorbed through the tissues of the mouth. She is resting peacefully and we are adjusting her drugs as appropriate to keep her comfortable.
Visitors are welcome; please txt me before coming over. Kate’s parents have gone home, but Sue is still here and my father is with us for a few days. The house can be quite crowded at times (at one point this morning we had ten people, including two friends, a caregiver, a nurse, a home health aide, and a notary). If you do visit, you should not expect Kate to respond to your presence, although she may open her eyes and look at you. She is not quite conscious, but not exactly unconscious either. We think it is soothing to her to have calm voices nearby.
Thanks for your help and support.
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.
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.
- In Seattle, on Tuesday August 30, 7:00-8:30pm, we’ll be at the Wilde Rover Irish Pub and Restaurant, 111 Central Way, Kirkland, WA 98033.
- In Portland, on Thursday September 1, 7:00-8:30pm, we’ll be at the Lucky Lab on Hawthorne, 915 SE Hawthorne Blvd, Portland, OR 97214. <– NEW LOCATION!
Hope to see you there!
I’m heading to Kansas City tomorrow for the World Science Fiction Convention! Here’s where you can find me.
Thursday Aug 18, 2016:
- 10:00-11:00 AM in Autographing Space: Autographing: Christopher Husberg, David D. Levine, Diana Rowland
- 2:00-3:00 PM in room 2503B: The Care and Feeding of Minions
A panel of aspiring Evil Overlords need Minions to carry out their evil biddings. But now that minions have heard of collective bargaining and have seen what non evil overlords offer their workers, it isn’t as easy as it once was.
Mur Lafferty, Lynn Gold, David D. Levine, Julia Mandala
- 3:00-4:00 PM in room 2504B: Why I Write Short Stories
Most authors agree that short stories don’t pay the bills, but authors who are known for writing novels frequently turn their attention to the shorter forms. If it isn’t for the money, why do they spend their time and energy writing short stories?
James Patrick Kelly, Mary Robinette Kowal, David D. Levine, Bishop O’Connell, Charlie Jane Anders
- 6:30-7:00 PM in room 2203: Reading: David D. Levine
Friday Aug 18, 2016:
- 5:00-8:00 PM at the Kansas City Marriott Downtown in the Count Basie room: High Stakes Launch Party & Mass Signing
New York Times Bestselling Author George R. R. Martin will celebrate the release of the new hardcover High Stakes: A Wild Cards Novel with a gathering of Wild Cards authors. This is a special ticketed event and a Worldcon membership is not required.
George R. R. Martin, Melinda Snodgrass, Stephen Leigh, John Jos. Miller, Caroline Spector, Ian Tregillis, Carrie Vaughn, Max Gladstone, David D. Levine, Parris, Pat Cadigan, Marko Kloos, Gail Gerstner Miller, Mary Anne Mohanraj, Kevin Andrew Murphy, Diana Rowland, Walton (Bud) Simons, Bob Wayne, Walter Jon Williams, Michael Cassutt
Saturday Aug 20, 2016:
- 3:00-5:00 PM on Tucker Stage (3501A): George R R Martin’s Wild Cards Deathmatch
George R. R. Martin pits his Wild Card authors in a cage match for your (and his) amusement.
George R. R. Martin, Walter Jon Williams, Laura Mixon, Caroline Spector, Bob Wayne, Kevin Andrew Murphy, Diana Rowland, Michael Cassutt, David D. Levine, Stephen Leigh, Melinda Snodgrass, Mary Anne Mohanraj, Marko Kloos
Sunday Aug 21, 2016:
- 10:00-11:00 AM in room 3501F: How to Form a Writer’s Group
So you have decided to publicly declare your insanity and become a writer. How do you find similar souls and how can they help your dream? What can go wrong?
James Cambias, ElizaBeth Gilligan, David D. Levine, Julia Mandala, Walt Boyes
All events are in the Kansas City Convention Center except for the High Stakes Launch Party and Mass Signing.
Kate has been home from the hospital for a bit over two weeks now, working with in-home physical, occupational, and speech therapists once or twice a week each. She is still weak and wobbly — using a walker even in the house — and the aphasia is still pretty bad, but I believe both are improving. It’s slow and not consistent, but on average I think she’s getting a little better every day. In fact, she’s doing so well that the physical therapist thinks she ought to switch from in-home to outpatient therapy soon… maybe next week.
We’ve also signed up with an in-home health care firm. We have two different caregivers coming over on Wednesday and Friday afternoons. This will let me get out of the house or focus on tasks without having to worry about Kate. We are still figuring out how best to make use of their help while they are here, but it is helpful just to be able to take my mind off of Kate’s care for a couple of afternoons a week.
We met with the oncologist on Monday. He’s satisfied with her progress since the surgery and we are planning to start Avastin infusions in two weeks. The genetic testing isn’t back yet, but he says it’s unlikely to result in a big change in treatment. I’m not really happy about Kate getting an infusion every two weeks for the foreseeable future, but if it keeps the cancer from coming back I suppose it’s worth it. We are also ramping down the steroids (currently 6mg per day, down from 8mg) and pain meds. Next MRI is scheduled for this Saturday; this one is mostly to set a baseline for future scans.
We had an unplanned trip to Seattle last weekend, to visit a dear friend in the hospital there. She’s been hospitalized for more than a week and doesn’t have a diagnosis yet, which is worrisome. Many of you know who I’m talking about, and if you do I hope you’ll spare some good thoughts for her. The trip was stressful for a variety of reasons but Kate came through it like a champ.
As you may know, I had to cancel my planned readings in San Francisco this coming weekend. However, Kate’s sister is coming down from Seattle next week to stay with Kate while I attend the Worldcon in Kansas City. I hope to see some of you there.
So, all in all, things are not going too badly. I hope that we will continue to see slow but steady progress in the coming weeks.
I’m very pleased to announce that the highly-anticipated audiobook of Arabella of Mars is now available at Audible, Amazon, iTunes, and other audiobook vendors. The narrator is Barrie Kreinik and I am extremely happy with the sample I have heard.
I have also received my author copy of audiobook anthology The Year’s Top Ten Tales of Science Fiction 8 from Infinivox, which includes my Nebula-nominated story “Damage,” narrated by Nancy Linari. This one doesn’t seem to be available in stores yet but I’m sure it will be soon.
As most of you already know, my wife Kate has been extremely ill and spent almost the whole month of July in the hospital. She is back home now, but requires a lot of care. Her sister Sue has very generously offered to come down from Seattle to take care of her while I’m at the Worldcon, but her vacation time is finite and she can’t manage the previous weekend as well. Therefore, with extremely great regret, I find that I must cancel my SF in SF and Writers with Drinks readings.
To say that I am profoundly disappointed at this turn of events is an understatement, especially given the relatively short notice I can give. I’d like to publicly thank the organizers of both events for making the space for me in their schedules, and I’m very sorry to let them — and my friends in San Francisco — down. I hope to be able to reschedule both events for some time in the future.
Friday, July 29 at 7:00pm (that’s TOMORROW!) I will be reading from my debut novel Arabella of Mars at the U District branch of the University Bookstore in Seattle. But I’m not just going to be reading and signing books — I will also be rapping, and leading a singalong, and giving away freebies… in costume. I hope that you will attend if you can, and if you have a Regency or other steampunky outfit I hope you will wear it. It should be a lot of fun. Tell your friends!
(If you can’t make it, you can order a signed copy from the store.)
Thanks to Hal O’Brien for the photo. Extra special thanks to Kate’s sister Sue for making this reading possible by her continued support above and beyond the call of sanity.