(Saying among prizefighters)
I have end-stage Breast Cancer -- Kaiser has left me high & dry
I'm reaching out for help
I've been trying to put on a brave face, but the past few weeks have become an unimaginable mess. I may have placed myself in dire straits. My life is ending, and I'm running out of funds.
Stage IV Metastatic Breast Cancer
Triple Positive (rare type)
Prognosis = "weeks" to live/palliative care only
Multiple (10+) brain tumors
Two years ago, I underwent radiation and surgery for a rare form of breast cancer. 'Thought It was all gone but then ~two months ago, I started having debiliating vertigo & headaches. An MRI found brain tumors. Life just sort of unravelled.
What I hope happens
My wish is to die quietly at home -- no hospitals or hoopla. No trying to drag it out. I am ready. I am unafraid.
Please understand -- I'm not complaining. I'm sure that people have it way worse. I'm just trying to honestly convey what's happened and ask for help.
Kaiser Permanente Hospice (which I joined 3-4 weeks ago) failed to provide a doctor's signed letter for my State disability claim. It was rejected. There's been a delay in getting CA funds that I've paid in to cover living expenses.
Kaiser is threatening to drop my coverage due to their own delay. If they do, I won't have even the basic end-of-life meds & care, nor will I have the funds I secured for my own cremation.
In addition, Ihad a multi-year IRS audit/ TurboTax glitch that ate through most of my savings this year.
Please don't assume any support from SP-Teri. Despite my 10-year engagement to Aaron, I haven't received any help from there, nor to I anticipate receiving any, with the notable exception of Aaron's mom Patti, who's been incredibly generous and Aaron's brother, Bryan, who's been amazingly supportive. Aaron, of course, is devastated and doing everything he can.
A day in the life
The day begins at dawn but I've lain awake for hours. I roll over and it feels like my head is full of leaden ostrich eggs. They shift, heavily, clumsily. I breathe. After a time, I arise. Getting up is more horizontal than vertical.
Sunlight/daylight hurts. Sounds hurt. I see double and have optical migraines. When someone sends a text or an email, I can see there's something there. Figuring out what it is & who it's from takes some doing, sometimes days.
I can't tilt my head forward, back, or much to either side with intense pressure/vertigo.
Wobbling and pitching into the next room, I hold walls to navigate the small space and begin to take the day's meds with the requisite food & water. I don't dare miss the steroid dose, even though it might mean choking. It's a place I don't want to go.
Fatique is becoming more of a factor. It's like inhabiting a planet with a very heavy atmosphere, so everything is slow. It took me 3-4 weeks to write this badly organized page.
I can't stand the sight of myself in the mirror, all swolly and unrecognizable from the pills, so I hurry past, trying hard not to look.
An hour after the meds kick in, I'm ravenously hungry and nauseated at the same time. Feels vaguely like morning sickness but much more intense.
At last, I settle in. 'Try to read but the the pressure is like snorkeling, glass pressed against the face.
By the time I brush my teeth & wash up, the day's grooming effort has spent me. I curl up with the dog in a long nap -- the first of 4-5 throughout the day. Lather. Rinse. Repeat.
In all likelihood, I'll never leave my house again.
Please, let me say how grateful I am
So many cherished friends & family have already reached out with love, prayers & gifts. I'm overwhelmed with all the generous & heartfelt outpourings. I feel churlish for asking any more.
I wish people understood that talking on the phone physically hurts; that sometimes checking a simple text message is like hanging on to the side a building in an earthquake. I love everyone so much and I don't want anyone to feel ignored or unappreciated.
From cake pops to jam to cookies & hand-penned comic strips, flowers & edible arrangements, posh London shop boxes, cat pictures... even rent money. I've been lavished with so many cards, good wishes and gifts -- I feel truly blessed. My only concern is that I'll miss acknowedging someone's specific gift. If I do so, please, please forgive me.
Also, please know that I have no judgment, here. If you're able to help out, that's wonderful. If you're not, it won't change my opinion or the way I view you/us.
'Sending you lots of love.
- Heewoo Shin
- Amy Pisoni
- Rudy and Johanna Watson
- William Papineau
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