#Kaiser Permanente

[mostlysignssomeportents]

How to have cancer

THIS WEEKEND (November 8-10), I'll be in TUCSON, AZ: I'm the GUEST OF HONOR at the TUSCON SCIENCE FICTION CONVENTION.

I've got cancer but it's probably (almost certainly, really) okay. Within a very short period I will no longer have cancer (at least for now). This is the best kind of cancer to have – the kind that is caught early and treated easily – but I've learned a few things on the way that I want to share with you.

Last spring, my wife put her arm around my waist and said, "Hey, what's this on your rib?" She's a lot more observant than I am, and honestly, when was the last time you palpated your back over your left floating rib? Sure enough, there was a lump there, a kind of squishy, fatty raised thing, half a centimeter wide and about four centimeters long.

I'm a 53 year old man with a family history of cancer. My father was diagnosed with lymphatic cancer at 55. So I called my doctor and asked for an appointment to have the lump checked over.

I'm signed up with Southern California Kaiser Permanente, which is as close as you come to the Canadian medicare system I grew up under and the NHS system I lived under for more than a decade. Broadly speaking, I really like KP. Its app – while terrible – isn't as terrible as the other apps, and they've taken very good care of me for both routine things like vaccinations and checkups, and serious stuff, like a double hip replacement.

Around the time of The Lump, I'd been assigned a new primary care physician – my old one retired – and so this was my first appointment with her. I used the KP app to book it, and I was offered appointments six weeks in the future. My new doc was busy! I booked the first slot.

This was my first mistake. I didn't need to wait to see my PCP to get my lump checked over. There was really only two things that my doc was gonna do, either prod it and say, "This is an extremely common whatchamacallit and you don't need to worry" or "You should go get this scanned by a radiologist." I didn't need a specific doctor to do this. I could have ridden my bike down to the KP-affiliated Urgent Care at our local Target store and gotten an immediate referral to radiology.

Six weeks go by, and my doc kind of rolls the weird lump between her fingers and says, "You'd better go see a radiologist." I called the Kaiser appointment line and booked it that day, and a couple weeks later I had a scan.

The next day, the app notified me that radiology report was available in my electronic heath record. It's mostly technical jargon ("Echogenic areas within mass suggest fatty component but atypical for a lipoma") but certain phrases leapt out at me: "malignant masses cannot be excluded. Follow up advised."

That I understood. I immediately left my doctor a note saying that I needed a biopsy referral and set back to wait. Two days went by. I left her a voice message. Another two days went by. I sent another email. Nothing, then a weekend, then more nothing.

I called Kaiser and asked to be switched to another Primary Care Physician. It was a totally painless and quick procedure and within an hour my new doc's intake staff had reviewed my chart, called me up, and referred me for a biopsy.

This was my second mistake. When my doctor didn't get back to me within a day, I should have called up KP and raised hell, demanding an immediate surgical referral.

What I did do was call Kaiser Member Services and file a grievance. I made it very clear that when I visited my doctor, I had been very happy with the care I received, but that she and her staff were clearly totally overloaded and needed some kind of administrative intervention so that their patients didn't end up in limbo.

This is a privilege. I'm a native English speaker, and although I was worried about a serious illness, I didn't have any serious symptoms. I had the ability and the stamina to force action in the system, and my doing so meant that other patients, not so well situated as I was, would not be stuck where I had been, with fewer resources to get un-stuck.

The surgeon who did the biopsy was great. He removed my mass. It was a gross lump of yellowy-red gunk in formaldehyde. He even let me photograph it before it went to pathology (warning, gross):

https://www.flickr.com/photos/doctorow/54038418981/

They told me that the pathology would take 2-5 days. I reloaded the "test results" tab in the KP website religiously after 48 hours. Nothing was updated. After five days, I called the surgical department (I had been given a direct number to reach them in case of postsurgical infections, and made a careful note of it).

It turned out that the pathology report had been in hand for three days at that point, but it was "preliminary" pending some DNA testing. Still, it was enough that the surgeon referred me to an oncologist.

This was my third mistake: I should have called after 48 hours and asked whether the pathology report was in hand, and if not, whether they could check with pathology. However, I did something very right this time: I got a phone number to reach the specialist directly, rather than going through the Kaiser main number.

My oncologist appointment was very reassuring. The oncologist explained the kind of cancer I had ("follicular lymphoma"), the initial prognosis (very positive, though it was weird that it manifested on my rib, so far from a lymph node) and what needed to happen next (a CT/PET scan). He also walked me through the best, worst and medium-cases for treatment, based on different scan outcomes. This was really good, as it helped me think through how I would manage upcoming events – book tours, a book deadline, work travel, our family Christmas vacation plans – based on these possibilities.

The oncologist gave me a number for Kaiser Nuclear Medicine. I called them from the parking lot before leaving the Kaiser hospital and left a message for the scheduler to call me back. Then I drove home.

This was my fourth mistake. The Kaiser hospital in LA is the main hub for Kaiser Southern California, and the Nuclear Medicine department was right there. I could have walked over and made an appointment in person.

Instead, I left messages daily for the next five days, waited a weekend, then called up my oncologist's staff and asked them to intervene. I also called Kaiser Member Services and filed an "urgent grievance" (just what it sounds like) and followed up by filing a complaint with the California Patient Advocate:

https://www.dmhc.ca.gov/

In both the complaint and the grievance, I made sure to note that the outgoing message at Nuclear Medicine scheduling was giving out false information (it said, "Sorry, all lines are busy," even at 2am!). Again, I was really careful to say that the action I was hoping for was both a prompt appointment for me (my oncologist had been very insistent upon this) but also that this was a very broken system that would be letting down every patient, not me, and it should be fixed.

Within a couple hours, I had a call back from KP grievances department, and an hour after that, I had an appointment for my scan. Unfortunately, that was three weeks away (so much for my oncologist's "immediate" order).

I had the scan last week, on Hallowe'en. It was really cool. The gadget was awesome, and the rad-techs were really experienced and glad to geek out with me about the way the scanner and the radioactive glucose they infused in me interacted. They even let me take pictures of the scan visualizations:

https://www.flickr.com/photos/doctorow/54108481109/

The radiology report was incredibly efficient. Within a matter of hours, I was poring over it. I had an appointment to see the doc on November 5, but I had been reading up on the scans and I was pretty sure the news was good ("No enlarged or FDG avid lymph nodes are noted within the neck, chest, abdomen, or pelvis. No findings of FDG avid splenic or bone marrow involvement").

There was just one area of concern: "Moderate FDG uptake associated with a round 1.3 cm left inguinal lymph node." The radiologist advised the oncologist to "consider correlation with tissue sampling."

Today was my oncology appointment. For entirely separate reasons, I was unable to travel to the hospital today: I wrenched my back over the weekend and yesterday morning, it was so bad that I couldn't even scratch my nose without triggering unbearable spams. After spending all day yesterday in the ER (after being lifted out of my house on a stretcher), getting MRIs and pain meds, I'm much better off, though still unable to get out of bed for more than a few minutes at a time.

So this morning at 8:30 sharp, I started calling the oncology department and appointment services to get that appointment changed over to a virtual visit. While I spent an hour trying various non-working phone numbers and unsuccessfully trying to get Kaiser appointment services to reach my oncologist, I tried to message him through the KP app. It turns out that because he is a visiting fellow and not staff, this wasn't possible.

I eventually got through to the oncology department and had the appointment switched over. The oncology nurse told me that they've been trying for months to get KP to fix the bug where fellows can't be messaged by patients. So as soon as I got off the phone with her, I called member services and filed another grievance. Why bother, if I'd gotten what I needed? Same logic as before: if you have the stamina and skills to demand a fix to a broken system, you have a duty to use them.

I got off the phone with my oncologist about an hour ago. It went fine. I'm going to get a needle biopsy on that one suss node. If it comes back positive, I'll get a few very local, very low-powered radiation therapy interventions, whose worst side effect will be "a mild sunburn over a very small area." If it's negative, we're done, but I'll get quarterly CT/PET scans to be on the safe side.

Before I got off the phone, I made sure to get the name of the department where the needle biopsy would be performed and a phone number. The order for the biopsy just posted to my health record, and now I'm redialing the department to book in that appointment (I'm not waiting around for them to call me).

While I redial, a few more lessons from my experience. First, who do you tell? I told my wife and my parents, because I didn't want to go through a multi-week period of serious anxiety all on my own. Here, too, I made a mistake: I neglected to ask them not to tell anyone else. The word spread a little before I put a lid on things. I wanted to keep the circle of people who knew this was going on small, until I knew what was what. There's no point in worrying other people, of course, and my own worry wasn't going to be helped by having to repeat, "Well, it looks pretty good, but we won't know until I've had a scan/my appointment/etc."

Next, how to manage the process: this is a complex, multi-stage process. It began with a physician appointment, then a radiologist, then a pathology report, then surgery, then another pathology report, then an oncologist, then a scan, then another radiologist, and finally, the oncologist again.

That's a lot of path-dependent, interdepartmental stuff, with a lot of ways that things can fall off the rails (when my dad had cancer at my age, there was a big gap in care when one hospital lost a fax from another hospital department and my folks assumed that if they hadn't heard back, everything was fine).

So I have been making extensive use of a suspense file, where I record what I'm waiting for, who is supposed to provide it, and when it is due. Though I had several places where my care continuity crumbled some, there would have been far more if I hadn't done this:

https://pluralistic.net/2024/10/26/one-weird-trick/#todo

The title of this piece is "how to have cancer," but what it really boils down to is, "things I learned from my own cancer." As I've noted, I'm playing this one on the easiest setting: I have no symptoms, I speak and write English fluently, I am computer literate and reasonably capable of parsing medical/technical jargon. I have excellent insurance.

If any of these advantages hadn't been there, things would have been a lot harder. I'd have needed these lessons even more.

To recap them:

See a frontline care worker as soon as possible: don't wait for an appointment with a specific MD. Practically any health worker can prod a lump and refer you for further testing;

Get a direct phone number for every specialist you are referred to (add this to your phone book); call them immediately after the referral to get scheduled (better yet, walk over to their offices and schedule the appointment in person);

Get a timeframe as to when your results are due and when you can expect to get a follow-up; call the direct number as soon as the due-date comes (use calendar reminders for this);

If you can't get a call back, an appointment, or a test result in a reasonable amount of time (use a suspense file to track this), lodge a formal complaint with your insurer/facility, and consider filing with the state regulator;

Think hard about who you're going to tell, and when, and talk over your own wishes about who they can tell, and when.

As you might imagine, I've spent some time talking to my parents today as these welcome results have come in. My mother is (mostly) retired now, and she's doing a lot of volunteer work on end-of-life care. She recommends a book called Hope for the Best, Plan for the Rest: 7 Keys for Navigating a Life-Changing Diagnosis:

https://pagetwo.com/book/hope-for-the-best-plan-for-the-rest/

I haven't read it, but it looks like it's got excellent advice, especially for people who lack the self-advocacy capabilities and circumstances I'm privileged with. According to my mom, who uses it in workshops, there's a lot of emphasis on the role that families and friends can play in helping someone whose physical, mental and/or emotional health are compromised.

So, that's it. I've got cancer. No cancer is good. This cancer is better than most. I am almost certainly fine. Every medical professional I've dealt with, and all the administrative support staff at Kaiser, have been excellent. Even the doc who dropped the ball on my biopsy was really good to deal with – she was just clearly drowning in work. The problems I had are with the system, not the people. I'm profoundly grateful to all of them for the help they gave me, the interest and compassion they showed, and the clarity and respect they demonstrated in my dealings with them.

I'm also very grateful to my wife, my parents, and my boss at EFF, all of whom got the news early and demonstrated patience, love, and support that helped in my own dark hours over the past couple of months.

I hope you're well. But you know, everyone gets something, eventually. When you find yourself mired in a broken system full of good people, work the system – for yourself and for the people who come behind you. Take records. Make calls.

Look after yourself.

If you'd like an essay-formatted version of this post to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:

https://pluralistic.net/2024/11/05/carcinoma-angels/#squeaky-nail

[foone]

Kaiser has a brilliant plan to cut down on doctor's appointments.

When you're sick, you try to make an appointment, and they only offer dates so far in the future that you'll either be dead, or will have been so bedridden that you'll not be able to work, lose your job, and thus your healthcare by then.

either way, you don't make it to the appointment.

[foxtrotunicorncharliekilo]

Kaiser Permanente has the absolute nerve to call a stapedectomy—a surgery that can restore hearing for certain types of deafness—‘cosmetic’ if only one ear is affected. Honey, you read that right. Apparently, hearing out of both ears is now on par with getting your nose done. Only in the United States…

[iww-gnv]

Mass layoffs have been announced for workers in the fast food and healthcare industries in California in response to two bills that will raise minimum wages for workers in both industries. Wages in the fast food industry go to $20 an hour this year, and healthcare workers’ wages rise to between $18 - $23 an hour in the next year. Fast food chain Pizza Hut, operated by PacPizza, LLC, recently announced its plan to lay off more than 1,200 workers across California, as outlined in a federal WARN Act notice filed by the chain in December 2023. The layoffs reflect the ongoing social crisis in California, the country’s most populous state, as workers struggle to afford the high cost of living.  Soon after passage of the minimum wage bill, Kaiser Permanente, one of California’s largest healthcare worker employers, also announced its decision to lay off 115 of its IT workers.  Starting in April 2024, the minimum wage for California fast food workers will increase from $16 an hour to $20 an hour, a 30 percent increase that has faced increasing backlash from the corporations, who are seeking to avoid paying a living wage to their workers under the legislation.

[reasonsforhope]

Non-paywalled version here.

"Tens of thousands of workers at Kaiser Permanente hospitals and clinics across the country will soon vote on whether to authorize a strike, union officials announced Thursday.

The Coalition of Kaiser Permanente Unions, which includes a dozen local unions with members in seven states and the District of Columbia, said voting would begin Saturday [August 26] and extend into the middle of September. Any strike would start no earlier than Oct. 1.

More than 80,000 employees are represented by the coalition, which counts among its members a wide range of hospital and clinic workers including nursing assistants, phlebotomists, pharmacy technicians and housekeepers. The coalition said that it represents roughly 40% of the overall Kaiser Permanente workforce.

Union leaders said that if a strike moves forward, it would be the largest strike of healthcare workers in the history of the country. They faulted Kaiser for inadequate and unsafe staffing and said the healthcare giant had failed to bargain with them in good faith by refusing to provide them with crucial information during negotiations, among other unfair labor practices.

“Patient care is in crisis at Kaiser Permanente,” said Linda Bridges, president of one of the unions in the coalition, OPEIU Local 2in Silver Spring, Md. “Staffing was decimated during the pandemic and it has not gotten any better. The problem we’re dealing with is Kaiser is not hearing us.

“Kaiser can and must do better. ... They need to stop the unfair labor practices and address the healthcare staffing needs now.”

Regan, the SEIU-UHW president, said the coalition has proposed a $25 hourly minimum wage for its members across the Kaiser Permanente system, saying that “you cannot take care of a family in Los Angeles, San Diego, Denver, Washington, D.C., Seattle, Honolulu” on $19 to $21 an hour. He said Kaiser had recently proposed a much lower minimum — $21 an hour — in 2026."

-via Los Angeles Times, August 24, 2023

Note: Also, if you have Kaiser and you've been putting off any doctors appointments, uh...you might want to make those asap.

[butterflyinthewell]

Mental health workers for Kaiser Permanente in Southern California are on strike (my therapist included) due to unlivable working conditions, and now KP is denying them grocery deliveries.

Spread this!

[destielmemenews]

"Picketers across California, Colorado, Oregon and Washington who are represented by a coalition of unions walked off the job Wednesday. They are seeking higher wages and solutions to a short-staffing crisis, exacerbated by the pandemic, that has left workers feeling overburdened and run down."

source 1

source 2

source 3

[thedisablednaturalist]

My doctor is literally cutting off my pain meds. Because I annoyed her. I have one refill left. So I'm supposed to do all the tapering myself?? Yeah that worked GREAT last time

[gwydionmisha]

I Support the Strike.

[corporationsarepeople]

Kaiser acknowledged its staffing challenges in a statement but argued the issue has affected health care providers nationwide.

“Every health care provider in the nation has been facing staffing shortages and fighting burnout. During the Great Resignation in 2021-22, more than 5 million people left their health care jobs across the country. Up to two-thirds of health care staff are saying they are burnt out and more than 1 in 5 are quitting,” the company said in a statement. “Kaiser Permanente is not immune from these challenges.”

Exactly. And if you want to keep the people you have, start treating them better.

BTW, the Kaiser CEO is paid $18m/year in salary. Kaiser is technically a non-profit. On what planet does anyone—literally anyone—need to be paid $18m/year?

No executive of any company can economically justify needing to be paid more than 10x their lowest-paid worker. Not the average worker, of which he’s pushing close to 100x, the lowest paid.

10x is reasonable. It’s enough to live very, very comfortably, and if your lowest paid worker can afford to put a roof over their head, it’s enough to live in luxury.

[quiltedcottage]

as much as i am stressing about life in the u.s. taking a major downturn on multiple fronts, i am super proud of everyone going on strike. i hope this momentum stays.

i don’t care if my quality of life gets worse because people are striking for basic rights and a sustainable income. i do care if it’s at the hands of greedy af corporations and corrupt government. the people have to take back what’s rightfully theirs and it will make life a bit harder in the interim. i’d rather have an actual democracy over enjoying “business as usual”.

[kerri-the-skunk]

Here's the first actually cool ad I've gotten:

This is from a union in the Portland (OR) Metro Area. Phamacists represented by the United Food and Commercial Workers Local 555 are going on strike due to Kaiser Permanente's unfair labor practices, including "failing to provide information regarding bargaining and grievances, attempting to directly deal with our members, and attempting to dictate to the Union who may serve as its representative". If you live in the Metro Area, the locations they're picketing are on their website here:

[iww-gnv]

Tens of thousands of workers at Kaiser Permanente health care locations -- including in Colorado -- are now on strike. Picketing has begun outside facilities like the Aurora Centrepoint Medical Offices where the strikers are wearing purple shirts and waving signs, many saying "PATIENT CARE!" There are approximately 30 places in Colorado where the picketing will be happening. The strike is the largest for health care workers in U.S. history and is expected to last for three days. Kaiser Permanente management and union leaders spent the night and into this morning trying to work out a deal. Over the weekend, the two sides failed to reach an agreement with the main issues being low pay, short staffing and long wait times that employees say many patients are facing. In addition to Colorado, the strike is happening in California, Oregon, Virginia, Washington state and Washington, D.C., according to the Coalition of Kaiser Permanente Unions.

[follow-up-news]

Kaiser Permanente reached a tentative deal with the unions representing 75,000 employees, following the largest-ever health care strike in US history. “The frontline healthcare workers of the Coalition of Kaiser Permanente Unions are excited to have reached a tentative agreement with Kaiser Permanente,” the union coalition said on X. “We are thankful for the instrumental support of Acting US Labor Secretary Julie Su.” The company also thanked Su its tweet about the deal. “We are excited to have reached a tentative agreement with the frontline health care workers of the union coalition. We are thankful for the instrumental involvement of Acting U.S. Labor Secretary Su,” it said in its tweet. The strike last week lasted only three days, the length of time it had been scheduled to run. But the coalition of unions was threatening an eight-day strike next month with even more workers walking out if a new deal was not reached by October 31. Details of the deal were not immediately available. The union had been seeking better pay and improved staffing levels at Kaiser hospitals and other facilities.

[maxphotoarchive]

June 18, 2016

[eosinophil-hate-blog]