cancer

As the health care debate continues, I wanted to look back at the costs of treatment for my wife’s cancer, as well as what was and wasn’t covered, and how our insurance and financial situation could have so easily bankrupted us.

I started by pulling up the total medical charges she accrued from December of last year through the end of August, when she passed away. That total came to $1,888,934.72

We were fortunate to have very good health insurance coverage. Of that total, we paid $1811.24 out of pocket in co-pays. (This doesn’t count all the other expenses, like food and transportation and lodging as we went back and forth to various hospitals, and so on.)

In other words, without health insurance, we would have been on the hook for close to two million dollars of medical bills over the course of nine months.

Back in 2015, when Amy was working full time at CMH, we decided I would try to quit my day job and write full-time. She would provide the salary and benefits, while I would bring in all that shiny author coin. Only my bosses at the day job didn’t want me to go, so they worked out a quarter-time position where I’d be able to work primarily from home. It meant a small but steady paycheck, and thanks to a clause in the Affordable Care Act, I was able to continue getting our health insurance coverage through my own job.

Why is that important? Because Amy’s benefits – vision and dental – ended in February 2019, because she hadn’t been working. On account of her being hospitalized with cancer.

Let’s assume things went as we’d planned. Assume we were on her health insurance. She’d been working full time for years, doing everything “right.” But then she got sick and couldn’t work. 2-3 months later, she lost her insurance.

Looking at the total charges for March through August, we would have been on the hook for $930,076.20 in medical bills.

The alternatives would have been either COBRA coverage, or else finding a plan on the Health Insurance exchange that provided something close to what we had.

COBRA coverage for our vision and dental after we lost Amy’s insurance for those was about $150/month. That stung, but compared to the medical numbers, I’m not gonna complain too much.

Equivalent health insurance coverage for our family, either through COBRA or the exchange, would have been around $2000/month. Better than having to pay a million in medical bills out of pocket, but how many people do you know who can afford an extra $2000/month in unexpected expenses?

Keep in mind, lymphoma is one hell of a preexisting condition. Without protections for those conditions, I’d have been stuck running a million-dollar medical GoFundMe.

I saw a Facebook friend the other day talking about how much he liked and wanted to keep his private insurance. Unfortunately, as I learned this year, employer-based coverage can disappear when you need it most. What’s the point of having great health insurance that only insures you as long as you don’t get too sick?

As horrible as this year has been, we were fortunate when it came to our health insurance. Lots of people aren’t. More than half a million families in the U.S. file for bankruptcy every year because of medical bills. Then there are those who are forced to ration their medicine or forego health care altogether.

We need to do better.

My wife Amy died yesterday, bringing an end to her nine-month fight with cancer.

There’s so much I want to say about her, and so much I’ll probably be writing in the future.

For now, know that she’s the strongest person I’ve ever known. She fought this thing so hard… Again and again, she surprised doctors and nurses with her strength and determination. That fight gave her the chance to see her son start high school, her daughter start her first real job. It gave us nine more months to be together and love each other.

She dealt with chronic pain for most of her life. Cancer and treatment made that worse. But at the end, she wasn’t hurting. She was comfortable. Her children were with her, along with me, her parents, and others who loved her.

She worked as a child and family therapist, and the tributes I’m already seeing from some of her clients and coworkers confirm what I already knew. This was her calling and her passion, second only to loving her children. She’s the most caring and empathic person I ever met. She helped and inspired so many people.

A few nights ago, we were able to transfer her to a wheelchair, and I took her for a walk outside the hospital. We got to enjoy the (sort of) fresh air, the flowers and trees around the hospital. She loved going for walks, and I’m so glad we had the chance to do one more.

Our family and a few close friends have been helping out, sharing love and support and grief, so we’re not alone. We’ve got a lot to do… it actually helps me a little to have things to do to keep myself busy for these first days.

I appreciate so much the love and understanding and support you’ve all shared through this. I hope you’ll understand if I’m a little hit-and-miss in responding to email and messages in the immediate future.

I’ve been telling my son the reason it hurts so much is because we love her so much, and as hard as that pain is, would we trade away the love and the time we had with her?

I was lucky enough to have almost sixteen years together with her as a family, and another fifteen as friends.

I’m sure I’ll share more in the days to come.

For now … I’m just so grateful for who she was and how much we shared and how much better our lives were because of her. And I miss her.

We’re still at Henry Ford Hospital in Detroit. Amy received the first round of RICE chemotherapy about two weeks ago. It appears to have helped some against the tumors, but it also hit her pretty hard. So we’re working to get her blood counts back up and help her regain her strength so she’s able to tolerate continued treatment.

Still a long road ahead of us to get her strong and healthy enough to be able to do the CAR T-cell procedure, which is the one that holds some hope for a cure. But she’s still fighting, and the rest of us are doing what we can to help.

I honestly don’t know what else to say here. Mostly, we’re just holding course and holding on…

A brief personal update.

The GEMOX chemo my wife began at the beginning of June has been ineffective. After meeting with the oncologist this morning, we’ve decided to try another type of chemo called RICE, which we’re hopeful will get her well enough for the CAR T-cell procedure. She also received another dose of radiation this morning to help try to shrink the various tumors.

She’ll be transferred to Henry Ford Hospital in Detroit this afternoon. If all goes well, she’ll be there for at least 1-2 months of treatment and recovery. Possibly more.

This obviously isn’t the news I was hoping to be able to share by this point in the process. But Amy’s not giving up. She’s fought through so much already. I knew she was strong, but I hadn’t realized just how strong…

Thank you all for the ongoing love and support. It helps.

There’s no real news on the cancer front. If all goes well, Amy will get the next dose of chemo on Monday and Tuesday. But we have to wait a bit longer to see if and how well this is working. We’re also waiting on insurance approval for the CAR T-cell procedure she needs. In the meantime, she’s still pretty weak, but her pain is better managed, which helps a lot.

This last round – discovering the masses in her abdomen after six months of chemo and treatment – flipped a switch in my brain. Before, I’d been struggling to make time to write, squeezing in anywhere from 200-500 words a few times a week. But with this setback, I just stopped.

I’m not quitting forever. Terminal Peace is still under contract, and I’ve got an idea for a contemporary fantasy I want to do next. But…priorities, you know? I need to spend time with my wife. I need to be there for the kids. And I need to stop pushing myself to do ALL THE THINGS, and to stop beating myself up for not being able to do everything.

My editor has been incredibly understanding. So much love for Sheila and DAW! The longer gap between books two and three of this trilogy is going to suck, but c’est la vie. I just can’t worry about that right this minute.

Another change I’ve started looking at involves the day job. Back in 2015, I mostly quit my full-time job with the state. The ended up creating a 10 hour/week job I could do mostly from home, which gave me a nice, modest income and provided a little structure to my weeks. But Amy’s not going to be well enough to go back to her job in the near future. We’re trying to get her long term disability straightened out, but so far it’s been “under review” for three weeks. And we’re paying for COBRA coverage for dental and vision right now.

All of which has me looking into going back to work full time. I’ve started having that conversation with my bosses, and it sounds like we should be able to figure something out. I don’t know what it will look like, exactly, but it should hopefully be enough for me to support my family.

It wouldn’t have been my first choice, but at least I have the choice. I don’t know exactly when I’ll make the change, either. I’ll be giving up some of that time with my wife and kids, which means I want to put it off as long as I can. But I might be able to continue telecommuting for at least some of it, which would help a lot. And I still have some sick time and FMLA I can use, if necessary.

Most of my books were written while working 40+ hours/week, so I know I can continue to do both, once things settle down a bit. For now though, we’re just gonna keep going one day at a time…

We’d been hoping to be done with chemo and moving toward a bone marrow transplant for my wife. Unfortunately, the scan eight days ago showed several masses in my wife’s abdomen. So we’ve spend most of the past week in the hospital, where they worked on pain management, hit the cancer with radiation, and began a new chemotherapy regimen.

Chemo will continue for approximately two months. This type of chemo attacks the cancer differently, so the hope is that while the cells may have developed some resistance to the prior chemo, this new type will wipe them out.

If all goes well, the doctors are talking about maybe using CAR T-cell therapy after chemo. Ideally, we’re hoping this would be the new “finishing move” against the cancer.

It’s been a difficult and scary week. I’m so grateful to friends and family who’ve been helping out and providing so much support while we try to cope with everything. We were able to get Amy out of the hospital yesterday afternoon, which is good. Now … now we’re back to waiting and hoping.

I don’t know how active or responsive I’ll be online. I hope the next one of these updates comes with better news.

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.

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.

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.

Not too much to report, actually. Which in some ways is probably a good thing.

The Storytime idea I brought up last week is still evolving into its final form. I have an idea for it that I really like, but I need to clear a couple of things with my agent first. This may or may not work out, but I’ll keep folks informed one way or another.

Over in Cancerland, my wife completed another round of chemo. She’s got a minimum of 2-3 more to come, and possibly as many as 5, before we head back to Detroit for the bone marrow transplant. This last round came with the traditional nausea and weakness, but after a week and a half of recovery, she’s doing pretty well again. (Just in time to go back in on Monday to start it all over again.)

In the midst of all this fear and uncertainty and wishing cancer would just go back to hell, I’ve also noticed how much closer Amy and I have been these past few months. No relationship is perfect, and ours has had its speed bumps and potholes. Cancer has a way of shaking everything up and recalibrating your priorities. There’s a lot more appreciation and gratitude and tenderness.

There’s also the simple fact that we get to spend more time together. Take yesterday – I took her in for a blood transfusion, which was supposed to start at 9 in the morning. Thanks to the lab mislabeling one of her blood tests, it didn’t actually start until past noon, and we didn’t get out of there until about 5 or so.

Which meant, essentially, we got to spend a day together just hanging out. A hospital room isn’t much fun, but we watched a bit of TV, read some of A Wind in the Door, went for a couple of walks around the unit, and just got to be together. I can’t remember the last time we were able to do something like that back when we were both working and running all over trying to keep up with everything.

If all goes well, we’ll be going out as a family for a belated birthday dinner for my son, and maybe even sneaking away again to see Captain Marvel before Amy starts back up with chemo. It’ll be nice to have a couple days of relative normalcy.