Kanani Kauka Kanani Support Team

First post: Jul 3, 2018 Latest post: Jun 5, 2019
Kanani Kauka died November 10, 2018.  She was asleep and just stopped breathing; Laura was holding her hand. Her memorial service was January 20, 2019 in San Francisco. Please continue to post photos and stories if you want. Laura will add photos and the program from the memorial service shortly. 

What's up: Kanani has been diagnosed with stage 4 lung cancer. 
On May 4th, she was weirdly short of breath walking to dinner. It got worse, so that night she went to the emergency room with shortness of breath, which turned out to be pulmonary embolisms. Over the last two months, she's been back in the hospital several times, the last time there for a week, including a few days in the ICU after a stroke. In the process of figuring out what was going on, she was diagnosed with stage 4 non-small cell lung cancer. The cancer caused the blood clots that led to pulmonary embolisms and several small strokes. She's healing from the strokes and still on oxygen to manage the shortness of breath. She's started chemo to control the cancer and extend survival but the cancer is not considered curable at this point. Chemo makes her feel really exhausted and uncomfortable. We're scared and heartbroken and feeling like everything's moving way too fast. We don't know what comes next or how long we have or answers to any of the more existential questions. 

September update: The cancer is responding to the chemo. She's also done a round of radiation to help shrink the tumors in her lymph nodes. She's feeling a bit better and is no longer using the oxygen but still very fatigued and sleeps a lot. She was getting fluid in her lung and now has a tube to drain it, which we can do at home. 

October update: Kanani has moved to in-home hospice care. The side effects from the chemo and radiation have outstripped the benefits from them. Focusing on comfort and quality of life at this point. See the journal entry for more information. 

How to help: People have been asking how to help or if they can do anything, which is hugely appreciated. We don't really know what we need yet (new lungs? cure for cancer?), but here are some things that have been helpful and some ideas. 

1. Send Kanani a note, a card, a text, a message, a kitten gif, a silly meme, or a bird photo that needs identifying. 
2. Come by and visit when she's feeling up for visitors (which can vary a lot from day to day, so roll with last minute changes, please.) 
3. Take Laura out for drinks or a hike or dinner something. She's trying to manage self-care but could use some help. 
4. Gift cards have been very helpful --- thank you to those of you who have already sent them to us. For food delivery, Caviar seems to be the best local option (https://www.trycaviar.com/gift_cards/new). We're ordering a lot of delivery food. Kanani doesn't have much of an appetite, so when she actually wants to eat something we try to get it right away. Amazon Prime has been great for ordering things like a cane, cushion for the wheelchair, and sheets for the hospital bed. Costco is a good alternative to Amazon. 
5. If you've gone through a cancer diagnosis and chemo, or supported someone who has, tell us what was helpful or not helpful. Looking for positive, practical suggestions here. 

Larger asks: 
-- If you're local and want to get more involved, talk to Laura about being part of the team that comes to hang out with Kanani and keep her company for a couple of hours or an evening (when Laura is out of the house. ) 
-- Sponsor professional house cleaning. We have a great house cleaner from La Colectiva. Chemo makes Kanani more vulnerable to germs so we need to step up our disinfectant game. Greta has generously offered to coordinate the cleaning and payments, and you can PayPal her at gretachristina@gmail.com if you want to help out. 

Medical details: She has stage 4 non-small cell lung cancer, with KRAS mutation. The cancer caused blood clots which created pulmonary embolisms and several minor strokes. She's healing from the strokes, including the one that affected her speech and swallowing. She going through chemo, to be followed by immunotherapy. The chemo is six three-week cycles, starting June 29th. She's on supplemental oxygen plus a flurry of prescription medications. She's getting her care at Kaiser and has a team of people looking after her plus various people coming to the house for physical therapy and so on. She's got pain and discomfort from the swollen lymph nodes in her chest and a cough that keeps her up at night. We have a hospital bed set up in the living room and an oxygen machine (it makes oxygen out of thin air!)  

How to stay in touch and get updates: 
You're in the right place. We'll post updates and requests for help here.