azurelunatic: panic button.  (panic)
Azure Jane Lunatic (Azz) 🌺 ([personal profile] azurelunatic) wrote2016-11-10 01:37 pm

My health and my (incoming) government

My readers who don't have access have seen precious little of me lately (and I've been scarce locked as well). Two big reasons.

First, and most delightfully, I am in some sort of relationship; the details are still being worked out, but the important part is that we have each other now. So that's been taking a fair chunk of my social time.

Second, when they took out my uterus and its baggage, they found cancer. My endometrium had gone rogue and was slightly over halfway through my uterine wall and making a break for the cervix. They took out: uterus, cervix, fallopian tubes, ovaries and all their cysts (some of them were pretty epic), and some upstream lymph nodes to see if the cancer had started to go systemic.

The lymph nodes, thank fuck, were clear. They do not have reason to believe that it has spread upstream at this time.

I completed a course of high dose radiation brachytherapy to nuke the fuck out of anything that had potentially managed to wander downstream into my vagina. That wrapped up on the 25th. It's been two weeks, and I get to commence with the dilators, in the hope that I will not develop vaginal stenosis. This process is ... undignified, but not painful.


I lost my long-term job in February. (I've had some gigs, but nothing long-term or offering coverage.) When the host company switched contractor management providers in 2015, I lost the crappy insurance I'd had through the first contractor management joint. (It would have paid up to $10,000 of something -- which burns through pretty fast if something major happens. I was terrified that something major would happen, and avoided doing anything that would get me diagnosed with a pre-existing condition.) The new contract management joint didn't give health benefits to anyone in their first year. (People with good tech jobs whose workplaces use contract labor: apply pressure to make sure your contractors are taken care of, either individually or by their management companies.)

Since 2015, I've had health coverage through the Affordable Care Act. I was able to sign up after losing the crappy insurance. I picked a plan with good coverage and good reviews, as I was aware that I probably had lurking health issues, and it would finally be safe to treat them. A decade and a half of little to no health care and untreated depression will do a number on you. A decade and a half of consciously avoiding health care to avoid getting a "pre-existing condition" sentence on my record made me avoidant even when I did have coverage, so I wound up avoiding check-ups, avoiding things that would give me poison diagnoses in service of a future when it became a crisis and I would need to be covered. But in 2015, I finally got a diagnosis for my depression. (I should have been diagnosed in 1993. I should have been treated in 1993. I wasn't.) I got some other things diagnosed and treated.

Since my sweetie and I are polyamorous, we're being intentionally careful about our sexual health. On my end, we figured it would be a good idea for me to get some sort of long-acting contraceptive. (My opinions on body-birth for me were well-established; reversible was not a deep concern.) I'd heard that "vaginal bleeding" postcoitally was a sign of cancer, but figured that wasn't me; I had a PCOS diagnosis, and the blood was quite definitely coming from inside the uterus, even if it happened after sex.

PRO TIP: WHEN THE BLOOD IS COMING FROM INSIDE THE UTERUS, THIS COUNTS AS VAGINAL BLEEDING.

So I'm a cancer survivor now.

I'm still paying quite a lot for my insurance. But.
Under the Affordable Care Act, I still get insurance.
Under the Affordable Care Act, if I switch insurers, my pre-existing conditions (cancer, depression, and other things) are still covered.
I don't have to worry about contraception anymore. My cancer ensured that I will never experience pregnancy or body-birth. But the Affordable Care Act would make sure that I could get access to contraception without worrying about the cost.

It's a fluke that I planned on becoming sexually active again this year. It was endometrial cancer gone rogue, so the surface cells of the cervix tested fine. I wasn't due another pap smear for years.

"How do you feel about having saved your partner's life?" a mutual friend asked my sweetie.
My sweetie looked uncomfortable: they didn't feel they'd done that much. Surely it would have been caught and treated, sooner or later.
Without them, it would have been later. Without them, it likely would have been post-ACA. I've seen friends struggle and beg to get live-saving operations that their insurance wouldn't cover. I thought we, as a country, were past that.


I still have conditions that can and will kill me if left untreated. The cancer may also spring up again. My best hope for a long and happy life is if I jump on a symptom immediately, even if I think it may not be a big deal. I'm scheduled for four pelvic exams a year for the next few, and it'll only drop off to yearly at the five year cancer free mark.

If the Affordable Care Act goes away without something better and more protective in place to catch the people who fall through the cracks of work insurance, private insurance, and insurance through a family member, I am likely to become uninsured. I tend to land jobs that put me above the poverty line, so programs intended to help out people in truly dire financial straits don't apply to me. The job that I worked four years and loved gave me utter crap insurance, because they were allowed to. The insurance disappeared after three years, because they were allowed to do that, too. The insurance I'm paying for now, under the Affordable Care Act, is still about 25% of the value of my rent. (Welcome to the San Francisco Bay Area.)


In a future without the ACA, I'm looking at a few possible outcomes:

  • Hope my state continues to think it's a good idea to strongarm insurance companies into covering people like me.

  • Hope my insurance company thinks it's a good idea to keep covering people like me without government intervention. (Ha ha ha. Ha.)

  • Hope that I land a job that thinks it's worth paying to keep its employees healthy, and does not treat them as disposable once they get sick.

  • Hope that I can marry or otherwise become legally partnered with someone whose job thinks it's worth paying to keep its employees and their spouses healthy, and does not treat them as disposable once they get sick.

  • Hope that if there's someone willing to marry me and share their health care (among other reasons, hopefully), that it remains legal for us to marry.

  • Hope that I get a job that offers health care, at all, period. (The place that only offered health benefits after one year, and stopped employing people at the one year mark, that one was hilarious.)

  • Hope that I can continue to access all of my current medications.

  • Hope that I can continue to access the medications that keep me from dying painfully within the next 2-5 years, and the medications that keep my depression a temporary and treated problem rather than a likely permanent and lethal one. (Again, this is the first year since age 13 or so that I have felt that I'm no worse a suicide risk than any other member of the population without chronic depression.)

  • Hope I don't get sick. Hope the depression doesn't flare up. Hope the ADD lets me focus well enough to hold down a job. Hope I find a job that works with my sleep schedule, rather than against it. Hope the sleep schedule lets me hold down any job, period. Hope that any minor illnesses I get don't jeopardize my job. (Fun fact for those who have never worked a service-industry type job: you find yourself going to work contagious and miserable because you've got to save the sick leave for when you genuinely cannot function or need a doctor's appointment during your normal hours of work. A doctor's note for a multiple-day illness has you spending a day's pay on a doctor visit co-pay or urgent care fee, and the first day of absence may hit your attendance record anyway. Or, if you're a disposable temp, they'll just drop you, because they only care about you not being contagious in their office and they need someone to do the work.)

  • Hope my family doesn't bankrupt themselves trying to keep me alive if I get badly sick.

  • Die, maybe. Probably painfully, with the added indignity of trying to navigate a bureaucratic hell while doing so.


Every one of those options fills me with terror. I very briefly considered whether it would be less pain and suffering overall to quit now, before having to go through health care hell again. It was a brief thought, since I am well-medicated. But that's the level of intolerable pain that I have a substantial chance of facing.

A friend of many friends (who I am told had probably worse health problems) and better access to lethal means ... also made this consideration. And [personal profile] tam_nonlinear, maintainer of an amazing website on exactly the topic you might expect from her username, has stopped her singing. Rest in power.


I'm not okay right now. I've been crying off and on yesterday and today. I am afraid, and I don't know how much the protective bureaucracies that surround the executive branch will be able to shield health care access and workers' rights from the predation of cheap-labor conservatives and the gig economy.

I know I have it much, much better than many. I have a protective and loving family who will try to do what they can to keep me covered and alive. I live in a state that generally wants to take care of its people even when they do it bassackward. I am destined for a state that's of similar opinions.

I am lucky. And I'm terrified.
jadelennox: Grey' s Anatomy: Bailey, Cristina, and Dr. Dixon hugging dysfunctionally (grey's anatomy: hug)

[personal profile] jadelennox 2016-11-11 03:09 am (UTC)(link)
I got nothing, except, you know. ♥

And fuck the bastards.

Also #FuckCancer
laurajv: Don't give me any wild ideas! (Default)

[personal profile] laurajv 2016-11-11 03:44 am (UTC)(link)
yes. goddamn.

alatefeline: Painting of a cat asleep on a book. (Default)

[personal profile] alatefeline 2016-11-11 04:32 am (UTC)(link)
<3 <3 <3

I also have nothing except: you are loved.
wohali: photograph of Joan (Default)

[personal profile] wohali 2016-11-11 08:54 am (UTC)(link)
♥♥♥
xinef: (Default)

[personal profile] xinef 2016-11-11 11:49 am (UTC)(link)
{hugs} So glad it seems to have been caught in time.

I really don't understand how the USA can consider it to be ok for ANYONE to not have basic health care. Almost all other first world countries have some form of universal health care except the USA. ACA was far from perfect, but was at least a step in the right direction. I hope that it all works out ok for you.
miss_s_b: (Default)

[personal profile] miss_s_b 2016-11-11 12:10 pm (UTC)(link)
This.
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)

[personal profile] kaberett 2016-11-11 06:50 pm (UTC)(link)
I love you.
umadoshi: (kittens - Jinksy - looking up)

[personal profile] umadoshi 2016-11-12 03:31 am (UTC)(link)
The current state of US health care, insofar as I understand it, still scares me; the thought of it reverting to a vastly worse state horrifies me beyond words.

I'm so glad your cancer was caught as early as it was, and so very, very glad you're here.
triadruid: Apollo and the Raven, c. 480 BC , Pistoxenus Painter  (Default)

[personal profile] triadruid 2016-11-16 02:28 am (UTC)(link)
Precisely this.

Glad you're still around, Azz.
17catherines: Amor Vincit Omnia (Default)

[personal profile] 17catherines 2016-11-15 12:26 am (UTC)(link)
I'm so sorry you've been going through so many hard things. If it's any comfort, a very close friend of mine had endometrial and uterine cancer two and a half years ago, also found by accident during an operation for something else (this seems to be the very best way to find a cancer). And she is now healthy and at her most recent checkup she was told that the chances of it ever coming back are now extremely remote. So it is possible, and I hope with all my heart that it will be the same for you.

Much love,

Catherine
silveradept: A kodama with a trombone. The trombone is playing music, even though it is held in a rest position (Default)

[personal profile] silveradept 2016-11-19 06:16 pm (UTC)(link)
<3