Color and light
Lani passed away last night at 11:30pm.
It was very peaceful, her breathing just slowed until it stopped. It was a relief to see her let go.
Everything happened so fast. I cannot express how painful and heartbreaking this is for me. My mum and I were so close. I am thankful I was able to suit up and show up for her at this time and have no regrets about doing all I possibly could for her comfort while she died. She was a creative force of color and light and the world is less bright with her gone. I am grateful to have the love and support of all of you friends and family. Please share any stories or photos or memories you have of her with me. I have her phone and email if you wish to reach me that way. I will continue to post things here as they arise. One day when things open up we will have a gathering to celebrate her and all she shared with us.
Love, Luisa
The end is near
Hello everyone, Luisa here. I have been putting off writing a post since yesterday but it needs to happen.
Lani took a significant turn for the worse on Tuesday. It was abrupt and horrible and though we did catch up to her increased pain levels with the medicine, she has not been conscious or responsive since Wednesday morning. I was really hoping to have more time with her, I think we all were. This cancer is brutal but thankfully it is also fast. Last night hospice set her up with an intravenous pain pump because swallowing pills was no longer an option. The pump is much more effective with her pain and today has been a peaceful day. Lani is comfortable and her body is actively shutting down. The space between breaths has been getting longer. I am taking good care of her with my Nana and praying for a swift and peaceful end. Please pray for her too if you can. Our collective love and prayers will help her with this transition.
Today I played the videos that had been submitted to the VidHug so far so she could hear your lovely words. I appreciated them and I am sure she did too. I look forward to any more videos that may come this way.
I will update soon.
Love, Lu
More forms of expression
Some friends made a GoFundMe for Luisa and I : gf.me/u/yvigka
Luisa started a VidHug where you can upload a video message to me: https://app.vidhug.com/love-for-lani/H19xE-jQP/record
I am Officially an Indoor Cat!
Throughout this experience I’ve been contemplating the life of an indoor cat, personally I believe a living being should not be condemned to indoor air forever. But last week on Wednesday August 26 I got my diagnosis, stage 4 pancreatic cancer. Rare, deadly, with very limited treatment options. Even before I got to the doctor’s appointment I planned to opt for hospice. Unless I heard a miracle, like 3 months on chemo would buy me 6 years of quality life. No miracle was offered, I was told I have weeks to live. I opted for hospice. Therefore now I am an indoor cat, like it or not!
Hospice came on Thursday and brought some physical relief right away. I don’t know what’s happening on the inside when you have this cancer, but outside you bloat up like mad— I gained 40 lbs of water in 10 days from the IVs, which then caused me to strain a muscle in my stomach trying to lift a weight I wasn’t used to.
Now, it is a juggling match to see loved ones, take care of my “estate”, and manage my pain. Hope to post more soon, I love seeing the old photos and hearing from you.
I love you all day, Lani
“I’m Fine.”
I’m fine.”
I’m not allowed to use this phrase, because as Luisa angrily pointed out I’ve been saying it for two months now and look where it’s got me! Instead I’ll say “ I’m OK for now.”
The desire for certainty of diagnosis, prognosis, treatments seems to be a grab for control. probably a very common one. But there’s always something waiting in the wings to remind me that I am not in control.
I would say I’ve been maintaining a positive attitude, partly of my own volition, partly of complete exhaustion, but mostly I’ve been moved by and appreciating the the depth of conversations this situation encourages. Even for those who are uncomfortable with with it —-I love it all.
Plus all the pictures from the past! 1980
RISD
He who must not be named…
Apparently …. the actual diagnosis is Still pending, so I’ve been kind of holding off. But the truth is it’s not a matter of getting better, it’s a matter of being as comfortable as I can. I’ve been pushing hard to get out of hospital today and it looks like that’s going to happen. I was hoping I’d get to take a hospital bed home with me but there’s a shortage.
Tonight imagine me in my colorful, cozy apartment being doted on by Luisa and my mom. Appreciating the comfort of home, and loving you all very much. This is the picture to hold for the next few days at least.
Preparing to go home
Preparing to leave.means transitioning away from the tower. I guess my trusty daemon doesn’t travel past these doors. Oh well. Seems like it’ll be another day in here working that out. And also working out my new set up with the chemo doctor closer to home. They still haven’t said exactly what type of cancer, they have the tissue they need just going to take a while to test it.
Thank you for the comments. Love all day!