[Cancer]
[cancer] Field notes from Cancerland, gone to Texas edition
Hospice and Palliative Care
Yesterday, Dad, Lisa Costello and I met with my primary care provider. We discussed palliative care and hospice as pre-planning for end of life options down the road. Nothing particularly surprising came out of the conversation, though I did learn a bit more about the distinction between palliative care (treating for pain relief and quality of life rather than cure) and hospice (a mechanism for delivering palliative care at or near end-of-life). In Oregon, most hospice care is in-home. Also, health insurance companies generally will not cover hospice care while life-saving treatments are still underway. This means that in most cases I could not enter hospice care while still receiving chemotherapy. There are some exceptions depending on the precise nature of the chemotherapy.
Second Opinions in the Lone Star State
Also, thanks to endless hours of effort on Dad’s part, we have finally nailed down the M.D. Anderson appointments. The three of us are flying to Texas on Friday and spending the weekend visiting friends and familiar (to me, at least) places in Austin. We’ll be in Houston from Sunday night on, with a whole series of appointments Tuesday, and Wednesday and Thursday open for follow-up appointments. We’re currently scheduled to fly back Thursday night of next week, with oncology and chemotherapy appointments at my home hospital on Friday March 8th, followed by the open dinner and my Powell’s reading that evening. Action packed week, in other words.
I’ll also note in passing that the intake process at M.D. Anderson is severely flawed. Dad handled most of this, but it was weeks of runarounds, misleading information, failures to followup on their part, and them repeatedly missing their own deadlines. Frustrating as heck. It is my profound hope that their medical practice is vastly superior to their administrative practices.
Persistently Annoying Insurance Problems
I received a phone call yesterday from my home hospital’s billing department on the issue of my oncologist being billed as out of network with my health insurance carrier. That would be call number twelve and twenty-one people spoken to thus far on this issue without reaching any satisfactory conclusion. I was told my account would be placed in “no billing” status until the hospital and my insurance carrier resolve their mutual billing issues. I guess my last round of bitching and escalation bore some fruit. At least it’s no longer up to me to carry the water on this. Not for now, at any rate.
Likewise, I recently had an issue with some health insurance coverage for ![[info]](http://l-stat.livejournal.com/img/userinfo.gif?v=1){kind=small}
the_child
Social Disruptions
Just lately my social life has been restarting. Except not without pretty significant disruptions in the process. The dilatory foot-dragging from M.D. Anderson meant I’d missed the window I’d left open in my schedule to go see them, based on their original guidance, and have had to cancel several important-to-me social and professional commitments. Likewise, the general chaos of late means I’ve had a lot of trouble (re)connecting with some of my friends, at least one of whom has taken my lack of availability in very bad part, as a personal affront. This is just my life now, part of me adjusting my identity as a sick person to recognize that I don’t have the time or energy to keep up with everyone and everything I used to be able to keep up with. That makes me sad. All the more so when the people around me aren’t able to recognize the issue and accept it.
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Posted: 6:04 am Thu February 28 2013 |
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2nd opinion is ALWAYS a good idea. My mother died in Sloane Kettering Memorial hospital. My father chose to die in his home, receiving palliative care. YOU are in charge! I am one of so many who care about you and want whatever is best for YOU. Screw the insurance bureaucrats.
Sorry to hear your friend isn’t being more understanding. Good luck in Texas!
Take care.
These posts are painful to read. (I can’t imagine what it’s like to write them.) But they are illuminating and useful. Thanks for doing them.
Thank you.
@jay_lake would love to make sure y’all get fed in Houston next week. Email my handle at att net. Will be in Austin Fri/Sat working race.
You should not be surprised that your friends and fans have not reached your level of understanding on your condition, Jay. It is a major adjustment, as you found out, yourself. Every family with someone having major medical problems goes through this.
Jay, someone has spammed one of your postings. I suggest you delete the posting, and re-post it, and see whether this stops the problem.
The spamming, allegedly by someone named “Muhammad Jumshed” has spread to another of your postings.
I am trying to stay ahead of it.
I initially felt anger toward the person who isn’t being understanding, but then I remembered how hard it is for my mother in law to understand my husband’s diabetes issues.
Hope your Texas experience is fruitful and enjoyable.
Heavens, I have trouble keeping up with all my friends and family and I have no excuse except my own introverted nature. Hope people can come to understand how hard it is for you to be dealing with all this. Best of luck with the appointments in Texas, and I hope you have fun visiting your old stomping grounds.