Trying to coordinate care between two hospitals has been very challenging for the past 18 months. Most of the early coordination was done by a local medical oncologist, who had extensive sarcoma expertise. That doctor has since moved to a different teaching hospital.
But, she promised me that she was leaving me in good hands with a new provider who would be up to speed quickly on my case, and on liposarcoma. Oddly enough, I still haven't seen him.
Instead, I was shunted off to a different medical oncologist. She is the person who detected the misread in my CT scans recently, but she's not a sarcoma expert. She is part time. And, she's retiring.
I had a treatment this morning - hydration, anti-nausea meds, and TPA to "unblock" my chemo port, which had developed a blood clot. I was able to talk to my triage nurse, but she told me the doctor was essentially unavailable today and all of next week.
So, I have no idea how things are going with Sloan Kettering.
The current doc helped to create a problem with my pain medications, and I need to get that resolved with a PA who is a back-up to my PCP next week. I'm not confident that that visit will go well. "Hi, you don't know me at all, but I had an opiate contract with one of your co-workers. My pain med needs increased, another doctor helped me to violate my old contract, and now I need a new contract with more pain medicine every month.". That has "pill seeker" written all over it, but hopefully my diagnosis will outweigh that concern.
So now, I will probably be pushed to the doc I was supposed to be pushed to a couple months ago. I'm fine with that, but it means starting all over again in some respects.
This means re-establishing communication between that doc and Sloan Kettering.
No one knows if I need my 7th round of chemo a week from Monday. I might not find out until that day.
I have no idea when I'll meet the new doc.
I'm at a crucial time in my care, with some big decisions coming up. And, communications are failing badly.
The only way to fix this is to do it myself, I'm afraid. I need to contact Sloan Kettering. I need to stay on top of every doctor, every nurse, every caregiver.
For now, at least, I'm not involved in ongoing fights with my insurer. I'm good on insurance coverage, for this year at least.
But, after yesterday, I'm envisioning a future where I have to fight everyone for the care I need.
And, if you happen to be one of those people who like what the House did yesterday, do me a favor. Leave me a comment. Explain why my condition, which has zero known lifestyle causes, should just cause me to be abandoned by the healthcare system. Explain to me why I'm just unlucky and I get to die. I must be a bad person, according to a congressman from Alabama (a state where as many as 30% of the citizens have pre-existing conditions). I'm lucky in that I probably won't have to move from the liberal state where I live. I pay high taxes here and I'm sure VT will continue to incent their insurers to provide decent coverage for my condition, but also at an exorbitant cost. My current ACA policy costs me $22K per year, but it's saving my life right now. But, it only takes one small change and it would be fatal for me. If I lost the ability to seek treatment at a sarcoma specialty center in NY or MA, there are no sarcoma specialists in my local area. Being limited to local docs, being denied coverage for a pre-existing condition, or having my rates doubled, tripled, or worse (I've seen estimates that some patients with metastatic cancers can expect to pay $140K annually in premiums and out of pocket expenses with the high risk pool scenario) would be a truly fatal blow to me. For the record, my cancer is not yet metastatic. I've had only local recurrences, but I've had multiple recurrences, and eventually, metastasis to my lungs is very likely.
I've spent my adult as a taxpayer paying my fair share. I don't complain. I would rather have one person cheat the system, or even have 20 cheat the system, rather than deny a needed benefit to one person who really needs it. I think most of the civilized world thinks that way. I pay my taxes with that kind of attitude.
If you disagree, I'd love to hear about it.