In Texas or Ontario, everyone is sweaty.
When they find out they have a blood cancer.
I reassure them it is never easy to learn this, even if you have one of the "curable" or "easy" ones. Even if your CLL is stage 0 and you're in "watch and wait".
Or, much more often, "watch and worry".
Those CLL patients at stage 0 in watch and wait actually have the biggest hell of a time. Whenwillthiscancerrearupandgetme? Whenisitgoingtostartaffectingmyqualityoflife? Whycan'twejustgetitOUTOFMENOW? Nooneelsehastostresslikethis. Idon'twantCANCERinmybodyjusteatingmeup! GETITOUT!!
The people with acute leukemias or even myeloma get to DO something about their cancer, immediately. They take medications, they get chemotherapy, they undergo stem cell transplant. And many are cured or live knowing what they are dealing with. Or die, but never having had to question whenwherehow on a daily basis.
And then there is the crying need for money. I almost made an older grown woman cry last week because there is no money to give her husband for help with travel expenses to the hospital he needs to go to several times a month, an hour and a half away. I heard her voice wobble before she thanked me for the information and hung up the phone.
Who thanks someone for bad news?
I guess that goes back to being a "good girl" and a "lady" above all else.
Sometimes it's easier to deal with the people who curse. At you. At the system that made them unable to pay. At systematic oppression. Even though I don't, and do, have any/some responsibility for things being that way.
I am largely complicit.
I don't do much political agitating.
I tell myself this is because I don't want to be a target or seen as overly political.
But really I'm just lazy. And complicit. Because of my privilege.
I also believe it is because of that privilege that I even have this job in the first place. So I try to be a helpful person and offer everyone everything I know about. Except I don't. There are limited resources in the world and sometimes if I think I know something about someone, I don't or do offer certain gems and nuggets...I know charities can only handle so much and I'm selfish and don't want them to run out too soon. I want to maintain my toolbox, keep it flush. It's selfish. And sometimes I tell myself I am using my professional judgment, but really it's just selfish.
I have also seen how alive racism is in this country. Early in my training, I learned about a young black man in Louisiana who needed treatment to start NOW for his lymphoma, but he was told he could not have it until he paid his $3,000 deductible up front. He HAD INSURANCE and they wouldn't bill him later or set up a payment plan. I don't know of any white people with insurance who have had to pay their deductible up front. Isn't that even maybe illegal?
Many people of color are treated as though they are just stupid, which is why they call me when their doctors won't explain things to them. Their doctors have made the decision that they are unable to be educated and don't even explain what "leukemia" means. What. The. Fresh. Hell.
And just as often, I am a listening ear, a soft place to land, for someone who just needs someone who understands to cry to.
Sometimes after those calls, I want to cry, too.
Maybe that would be cathartic.
People in New York and California get state mandated disability benefits, like actual cash, when they get sick. That was a revelation. How progressive. New York is about to get a 12 week PAID family leave starting next year.
Why can't we all??
Why does getting sick mean life is over unless you are wealthy, in our country? You lose your health, your job, your income, then your house, your stability, your dignity....and you feel you'd be better off dead in that situation anyway.
It's worse than criminal, the lack of support system our country offers its most vulnerable.
If you've seen Game of Thrones, you're picturing exactly what I want you to picture.
I really hate it when my own agency runs out of money to help this endless maw of need out there in the world. So do the rest of my colleagues.
But money is finite.
The human spirit surely is not, but money is.
So, day after day, I log in, educate, listen, hope, pray with people, and send love. It's not enough, but it's something.