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In Other News, Cancer Still Sucks

We found out yesterday that a friend of Amy’s passed away last week from complications of leukemia/lymphoma. From everything Amy says, this was an incredibly good-hearted and compassionate person. So we’ve got the grief over losing a good person, as well as all of the fear this stirs up for our own situation.

Not much has really changed since last month. Amy finished up another round of chemo on Monday, so she’s pretty wiped out. There are some cumulative effects, so the exhaustion and stuff gets a little harder each time, but she’s getting through it.

The next step is another round of scans to see if she’s in remission and decide whether we can move on to the bone marrow transplant. We had a consult with the bone marrow transplant director in Detroit a week or two back. There are still a fair number of unknowns — not only the scan results, but whether her bone marrow is healthy enough for an autologous transplant. That’s where they use the patient’s own stem cells rather than getting a donor, which is what we’re hoping for. (Faster recovery, no rejection issues.) But her younger brother will be getting tested to see if he’s a match, just in case.

We meet with the oncologist again tomorrow. Hopefully we’ll get things scheduled soon, because all this waiting and uncertainty sucks.

Inigo Montoya - I hate waiting

I’ve been continuing to work to get the house ready. Chemo suppresses the immune system, and bone marrow transplant does the same, so there’s a lot of worry about potential infections and such. We’ve got people ripping out the gross carpet in the basement today, replacing it with vinyl laminate that should be a lot more sanitary. I’ve done a lot of dusting and cleaning and decluttering. It’s never going to be hospital-level sanitary, but we’re making progress.

I think we’re all feeling a bit burnt out by everything, but we’re getting through.

Obligatory Endgame Post, Mostly About Thor

I managed to make it out to see Endgame on Sunday 98% spoiler-free! Good timing, too. Later that night, I stumbled across at least three different spoilers on Twitter and Facebook.

General impression: I liked it better than Infinity War. Nothing about Endgame really shocked me, but I had fun, and it’s an impressive capstone to a decade of storytelling over 22 movies.

All right, spoiler stuff beyond the cut tag…

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Another Personal/Family Update

We have a slightly more concrete plan for the coming weeks, with the understanding that plans can change from day to day based on test results, scheduling issues, the whims of the insurance companies, and more.

Amy’s currently going through her third round of R-EPOCH chemotherapy (her fifth or sixth total round of chemo, depending on how you count them.) The goal is to do one more round the first full week in May, then do another CT scan. If she looks cancer-free at that time, we’ll move on to the bone marrow transplant step.

I got choked up the first time the phrase “cancer-free” came up. There’s so much hope and fear wrapped up in those two words, and in the results of that scan a month or so from now. We know she’s responded well to treatment so far, but there’s so much unknown…

We got to spend some good family time together for my birthday weekend, which was nice. I ate way too much, which was also nice 🙂

I’d like to believe the end is in sight, and we’re starting to move toward the next steps of her recovery and rebuilding our new normal. The whole family is pretty damn tired of cancer and chemo and all the rest. This crap gets old pretty quick.

We learned something exciting this week, though. Amy’s been using an infusion pump that delivers her chemo cocktail over the course of 3-4 days. But the tubing has sprung a leak at least three different times, all in the same spot. It looks like the chemotherapy meds are actually eating through the air filter in the line. These are the chemicals they’re pumping into my wife’s body…

Well, if they eat through filters, hopefully they’ll gobble up cancer cells even better.

U.S. Health Insurance: It’s a Trap!

Let me preface this post by saying, thanks to a clause in the ACA and a significant amount of luck, we’re all right.

The default in the United States is that you’re supposed to get insurance through your employer. The employer picks up some/most/all of the cost, and that coverage is considered one of the benefits of employment.

As you may recall, back in December, my wife was diagnosed with an aggressive stage 4 lymphoma. She spent about six weeks in the hospital, and if everything goes well and the chemo and bone marrow transplant both work, she might be able to go back to work at the end of the summer.

Fortunately, we have relatively good health insurance coverage. According to the benefit statements, her treatment has cost somewhere between half a million and a million dollars so far. We’ve only been responsible for a very tiny fraction of that cost.

Jump to last week, when we got a letter from a benefits management company. Because my wife hadn’t been working since late November, her benefits were being cancelled. The official reason was “reduced work hours.” Our options were to either pay for COBRA coverage to continue on the plan we had, or we could go to the Health Exchange to find a new plan. Either way, we were now responsible for the full cost of our health insurance. In addition, if we chose a new plan, we’d be responsible for any new deductibles.

Here’s where the luck kicks in. Back when I tried to quit my day job a few years back, they created a part-time position for me, one I could do mostly from home. And as a result, I could continue to receive health insurance (but not vision or dental) through that job.

The benefits management letter was telling us our family’s dental and vision insurance were no longer covered by my wife’s company. But we still have health insurance.

COBRA costs to continue dental and vision are about $150 a month for our family. We can handle that. What would have been a lot harder would be paying probably $1000-$2000 per month so we could continue getting health insurance through COBRA.

Cobra Commander

Think about it.

  1. You get health insurance through your employer, just like you’re supposed to.
  2. You get really sick. Fortunately, you have health insurance! Well done, you!
  3. Because you’re sick, you can’t go to work. A few months later, you lose your health insurance.
  4. Surprise! Not only are you on reduced income from not working, you’ve got to cover a couple thousand dollars of new expenses every month!

We’ve designed a system that abandons people when they need it the most. Is it any wonder we see hundreds of thousands of families declaring bankruptcy every year because of medical expenses?

Ackbar: It's a trap!

If my employer hadn’t really wanted to keep me on – so much that they created a new position for me,  and if the ACA hadn’t allowed me to continue receiving health insurance through them, I would currently be A) panicking like a cat in a cucumber field, and B) looking into GoFundMe and other ways of making sure we can continue to afford to keep my wife alive.

That we put people in this position when they’ve done everything “right” in terms of finding a job and working for years for their benefits – hell, the fact that we put anyone in this kind of position, period – is obscene. The whole for-profit approach to health care in this country is literally killing people.

My family is very fortunate in many ways, and we’re all right for now. But as a country, we have got to do better.

Jim C. Hines