So, newsflash, waiting in the doc’s office to find out you probably have one of ten different kinds of cancer is not a fun activity. The ghost of Lorenz was present, space-time stretches and distorts, minutes drag by; it’s an ordeal. Every time a door opens into the waiting room, you wonder if now’s the time, the beginning of the end, where you will be beckoned back into the bowels of medical wonderland for a grim pep talk on the kick-ass advances in chemo-therapy or bone-marrow replacement waiting for you. An adventure of sorts, into the irreducibly broken side of human physiology, where someone will play the anatomical model with a hidden pathological condition. Today, I landed that starring role, the door finally opened, my name was called.
Short answer, odds are good, almost a lock, that I don’t have leukemia or lymphoma. My liver, pancreas, lungs with a small exception, and even bowels are free of any obvious masses. That’s the good news. The bad news is I probably have a rare blood disorder, but I’ll be damned if I can remember the name of it. I like to think of myself as a reasonably brave person, but maybe less so as the clock ticks toward old age, because the room almost started spinning in delightful relief after she told me about the negative cancer tests. My battered brain basically stopped recording at that point, pondering instead how much damage I could inflict on my now officially sanctioned-as-healthy-liver this weekend, while on a starvation budget, in celebration of life enriching ethanol.
If I recall it’s something about an autoimmune reaction and having too much iron and oxygen, it can get toxic, it has to be monitored. It can kill a person if it gets out of control, in a bunch of ways, because every organ and structure that draws blood is affected. It can also work hand-in-hand with other issues, injury or autoimmune stuff, anything that aggravates the immuno-response network. That stuff can run away with itself, cause leukocytes to spike, and now you have a bunch of white-cell gangs running through fragile tissues like miniature, armed wolfpacks on a million search and destroy missions.
On the white counts and other signs, the blood tests that kicked this round of panic off, and were even subsequently confirmed as worse a few weeks later, read like a lead-pipe cinch for a case of raging leukemia or lymphoma. My doc was sure, dead certain, right up until these more comprehensive results came back two days ago, that that’s exactly what I had. She was all set to refer me immediately to an oncologist and trying to figure out the best way to break the news, when she got the newer data.
On the employment side of things, this is exactly the kind of diagnosis I feared. Bad enough to make me feel miserable, wiped out, tired as hell sometimes, scary looking enough for docs to tell me to drop everything and not move until it’s dialed in, but I don’t know if it will be bad enough to generate a short-term disability claim and keep me from getting fired. If that happens I lose my health insurance, next week, I’ll have to pick up COBRA premiums at almost a grand a month. Starting next year I might be able to get a decent gold or platinum level policy on the Obamacare exchange for considerably less.
To put a real fine point on it, without the ACA and the requirement to cover preexisting conditions, I would be absolutely fucked once COBRA ran out or if I couldn’t swing that fat premium for a single month. No insurance company would ever touch a guy who had a heart attack and this kind of deal on top of it in the space of a few months. Even if you look this healthy at age 51, which brings up another issue that was found.
I may have broken a rib, somehow, some weeks ago apparently. Probably from the insane ab workouts, not to mention being older and more brittle. I got vain and kind of carried away when I saw the six-pack starting to peek out after being overweight for a number of years. Whatever happened to that bottom right rib, it’s healing or trying to, but probably because I didn’t know I had done that, and didn’t baby it, some inflammation developed and a few hundred CC’s of fluid or blood leaked into my right lung along the way. Learning crazy wake-board tricks at my age is …well, maybe a factor too. And the girl I like who is a third-degree black-belt and can probably crack walnuts with her abs spurred me on … Anyway, that’s what caused the weird pain in my side, some alarming shortness of breath and minor dizziness, and may have contributed to high white counts and sed rates.
So bottom line, there are issues I have to navigate, both medical and financial. This blood deal has to be investigated further. But I’m not as worried and I’m not quite as desperate for every penny like I was a few days ago. Over a dozen kind people who frequent this site, people I have never met and would not recognize if I saw them, have already made sure I’m not dead broke after all these copays and missed work.
So yeah, as far as life, signs are I’ll probably be around for years to come, pointing out political malfeasance and annoying the faithful to the best of my ability.
Thank you, and thank all of those who emailed or left well wishes in comments, many of whom are themselves struggling, none of whom enjoy the luxury of a megaphone like mine to bleg for donations when things get tough. It shouldn’t be that way in a nation as prosperous as the United States.
But I’m lucky as hell. I still have the precious commodity of time, and I get to continue working to change some things on behalf of people who are running out of time.
Congrats it isn’t worse.
Thanks man, I’m pretty stoked actually. But, gawd, our employer dependent health care system is ghoulish.
Haemochromatosis? (aka ‘Haemosiderosis’ or ‘iron overload’)
My grandfather had that. Not fun stuff, as it made him diabetic before his problems were properly diagnosed. It’s apparently relatively common amongst people with Celtic and British family backgrounds, as high as 1% or so.
The good thing about it is that it’s fairly easy to treat as long as it’s caught early enough to avoid other damage. The standard treatment just amounts to bleeding the patient. For a time, my grandfather was having a pint of blood removed per week to get his iron levels back down to normal.
Good luck.
congratulations indeed…those visits are no fun. Glad you don’t have leukemia or lymphoma. Waiting for those kinds of tests is no darn fun. This current health care system is criminally evil and I’m glad the ACA is in place.
So, clearly I’m a great match for a vampire. Which is OK, vampires are hot. Yes Jason, it’s pretty bad isn’t it? When I consider that the exemplar of US patriotism and liberty on the right these days is a Canadian born Senator representing a state that brags about seceding, it puts things in perspective for me.
If an untreated broken rib isn’t enough of a medical condition for your work, then your country’s health care and labour laws are even worse than I ever imagined. Seriously. Jebus.
Crap! Left my comment on the wrong post – it probably doesn’t make sense there, in fact it doesn’t make sense at all. That’s what happens when you ramble on and on until nearly 2AM.
Anyway, good luck. (Editor’s note, wow, sobering comment: I’ve moved it per reader request and reproduced in full below — DS)
Exactly 4 weeks ago tonight, my mum had pain in her chest and was having trouble breathing (and thus sleeping). Next day she went to see the doctor who prescribed a course of antibiotics and referred her for a chest x-ray as a precaution. She was off work for the next week while the antibiotics did their thing. She seemed to recover fairly well – still not 100%, but healthier than many her age.
Just over 2 weeks ago (when the non-emergency x-ray was scheduled) she still wasn’t 100%, but was back at work and didn’t seem too worried. With hindsight, she probably was she just didn’t want to appear weak/worry her family unnecessarily.
The following Monday the doctor calls to say they’ve had the x-ray results and she wants my mum to go for a CT scan & bronchoscopy and she was booked in for that Friday. In the end, they also drained some fluid from her left lung the same day (which she told me about) and a couple of biopsies as part of the bronchoscopy (which she didn’t mention). They gave her an appointment to come back today for the results.
Now she’s put on a good act over the last week, but (until 4 weeks ago) she’d been a moderate to heavy smoker for over 40 years and even I can put 2 and 2 together. So last night I suggested she might want me to go with her to get the results. She said “Do you really want to? To be honest I’m not expecting good news.”
We both know full well what bad news is in this context. For at least a week (and probably more than twice that) she’s been contemplating the moment when a doctor sits her down and says she has cancer. And the night before she’s worried about me. Whether I’ll be upset by it all. Whether I’ll be able to cope.
I know she wants someone there to support her if her fears come true, but I also know she guilty for wanting to put any part of that burden on another person. Especially someone she still thinks it’s her job to look after and protect from the world. And I’m 39 next month.
So this morning I was sitting next to her when the first doctor explained about the small cell lung cancer and how it’s spread to the lymph nodes and possibly one of her ribs on the left side. And I was with her when the specialist nurse explained some of the support available. And I was holding her hand when the oncologist talked about the chemotherapy that would start next week, about the possible side-effects and the probable prognosis. And then I drove her home and I warmed up some home-made soup for our lunch.
And at no point did anyone ask about insurance. At no point did anyone mention co-pays. Every visit and every test she’s had, and every chemo session and every monitoring test from now on, have been and will be free at the point of need. Even the initial course of antibiotics were free, though if she’d have been a few years younger she’d have paid £7.85 for that.
It’s free because we live in the UK and 65 years ago Nye Bevan and many others created the NHS. And because for the last 4 decades she, and millions like her, have happily been paying a little extra in taxes to look after her fellow citizens. Confident that if/when she needed looking after, her fellow citizens would return the favour.
The last week, and the last 24 hours in particular, have not been easy. There has been, is, and will be, an awful lot to think and worry about. I simply can’t imagine how much harder it must be to be forced to also have to worry about all the financial side as well.
I know my mum’s treatment and care will not be “free”. I know she’s paid for it, I’ve paid for it, my sisters and everyone else I know (and many more I don’t) have paid for it. But because everyone pays and everyone’s covered and for all sorts of complicated reasons, what we pay is probably a fraction of what you’ve paid to get fucked over when you needed help the most.
So I didn’t need to get my bank card out this morning, and it probably wouldn’t make any difference to my mum if I had. But I hope it makes a difference to you tonight.
YAY! SO glad to hear it! On the bright side, if you can hang in there for two more months obamacare kicks in and the insurance problem gets way way less problematic. I’m counting down the days myself!
Stephen,
I’m so glad that it turned out to be something auto-immune, but I’m not at all surprised.
The stuff that I have tends to imitate MS. I’ve had several docs who have been certain that I had MS, but once the tests proved otherwise, they dropped me like a hot potato.
Keep looking for another job. Your current one is really the pits.
I had to read comment 7 several times to understand what I was really seeing. AsqJames contributed a chunk of money to me, for my expenses, even while his mother was just diagnosed with lung cancer and facing comprehensive treatment. He was able to do this because he lives in a nation that values the health of all its citizens. I’m both very grateful to him, and it’s sobering, leaving me a little bit ashamed of my country and our priorities, but somewhat inspired James lives in one where his mother gets cared for. There’s no fundamental reason, beyond mere political will, why we can’t develop that kind of system and enjoy the benefits in that kind of nation.
Congrats Andy on the rest of yer life.
Good luck to you and AsqJames and his mom. Modern medicine is of course not perfect, but each day it’s getting better at treating these things. Even now, at times it’s pretty awesome.
Asq James,
What an inspiring post! Your Mum is a brave lady, and I wish her the best.
You are so very lucky to live in the UK and to not have financial worries about healthcare.
It means that you can concentrate on your mother’s needs and work through this as a family.
From now on, whenever anyone criticizes the UK’s healthcare system, I will remember this post.
Take good care of your Mum, and take care of yourself, too.
You’re 51?! Holy shit man you look fantastic! Glad things didn’t end up as bad as they could be. I know your insides aren’t as healthy as the outside, but seriously, you look amazing for 51. Not even for 51, just in general!