We're here in Delaware with my sister in law, waiting for the worst of it. She's sleeping in the other room as the third oxycontin cleared yet another panicked painful episode. We're into week two of two weeks to live, after being in month 8 with 7 to 12 months to live. The worst of it is days away. Hopefully a precious several.
The worst of it is not end of life. The worst of it is still, today. about money.
I write to you today to help keep the focus were it needs to be; on the thousands of people that are faced with this situation each year, and to ask for personal help with our situation.
What I've learned this year has to do with Social Security and workplace security and what happens from the exact second someone is diagnosed with stage 4 pancreatic cancer.
What we all knew before this was that most Americans in this situation, even with the ACA, are in one of two categories:
- They are already broke
- They can afford to go broke.
My sister in law's name is Suzanne and she's tough as nails.
She worked the line at a chicken processing facility here in Delaware and had some aches that she thought were related to some new equipment that the facility had installed that required some extra effort. This certainly delayed an already difficult diagnosis with pancreatic cancer specifically.
Like most folks, she'd been behind on some bills from time to time, and always living paycheck to paycheck. But world be damned, she made it work.
She's a single mother of two girls and they live alone here in Delaware.
Courtney is 20 and paused her classes at EMT school to help take care of her mother. This has advanced her understanding of health care beyond what a lifetime of school could have offered. She has drained her mother's lung when it threaten to drown her early on, and as pleural effusion affected her breathing, once a week. Courtney (Corkey :) ) has managed the schedules of the growing number of pills and processes, from oxygen tanks to interferon to oxycontin.
With Courtney's job at a little shoe store at the outlet stores here, she's helped to keep some bills paid and pay for some of her mother’s meds. The entire planet should know the pride our family has for her and how she's handled this last year.
Catherine is 13, gets A's and B's and has been at the center of some of the more disturbing parts of this process, as Suzanne and Catherine’s father fight over keeping her here with her mother and her sister. Suzanne has said that she would die today if she knew her daughter would stay together here with the life they have built here in Delaware. This is notably unhelpful during an already impossible situation.
The simple fight that can be won for the thousands of people that will find themselves in this situation has to do with the five month Social Security disability benefit waiting period.
faq.ssa.gov/...
Surely, with a diagnosis like this, benefits can kick in immediately, and unnecessary financial pressure can be taken out of the first thoughts that strike through people who hear those words: "You have pancreatic cancer, stage 4. Without treatment you have about 7 months. With treatment, may be 11, may be more". The next thought should never, ever. be about whether you could see foreclosure or eviction, or about keeping the lights on at home. You google until you can no longer stay awake. You find hope in the research that is ongoing, knowing that results of this research may take years and hoping that it bears fruit. But there is hope. Always hope.
Within days of Suzanne's diagnosis, she started chemotherapy. With the type of work she did, she was forced to stay at home and hope for the best. The Union helped, but even this only lasted the first few months, and was unable to meet the basic needs the family had to keep the bills paid, payment on and gas in the car, and the mortgage up. Our family, and particularly her mother and father helped to make sure that these financial needs were met.
Suzanne's daughter Courtney has started a heartfelt gofundme campaign, and each contribution has turned a tear of sadness to a tear of gratitude in this family. Keeping in mind that $20 is a tank of gas to get them back and forth to work, $300 fills the heating oil to get through most of the winter, and every single dollar adds up for what is always an expensive family process of managing estate planning and arrangements. I’d think that a $5 contribution represents a commitment to keeping this issue that the front of our priority list once this disgraceful campaign season ends and we, as quickly as possible, shift into governing for this country.
www.gofundme.com/...
Please forward this to anyone who can help, whether to help Suzanne, Catherine and Courtney or to the candidates and public servants in your states that you're working for today, up and down the ballot, to keep this on the 100 day priority list. The fact that a 20 year old daughter in this situation had to turn to a go fund me campaign at all should be all that washington DC, and state houses across the country need to know about the problem at ground level, and this is a proud family, that just. doesn’t. do that.
I look forward to learning about any options that kosacks may be aware of that can be persued to minimize these stupid, unecessary burden caused by this disease, with estate planning, financial assistance and legal concerns we might not even yet be aware of. We are grateful.
Many don't have that 100 day luxury. We're a tight family and we'll get through the next 100 days, like American families have for centuries.
Most of us are from Pennsylvania, were we look forward to being the state that makes sure that the White House stays in the hands of those who will continue the fight for people like us.
These are the stories that chip away the bumper sticker politics we have today, and this is one we all can win.
Thanks for your time and for your effort.
westcott