cancer

Amy

Amy in 2016My 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.

Quick Personal Update

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…

Another Update

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.

Writing Hiatus and Other Changes

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…

Another Personal Update and Changing Plans

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.

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.

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.

Checking In Again

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.

Updates and Stuff

Cancer Stuff

We got back about a week ago from my wife’s latest round of chemo. She had an infusion reaction and a painful (but not life-threatening) side effect from one of the meds, but otherwise things went pretty well. The oncologist says the lymphoma is responding well to treatment.

In better news, it sounds like they’re going to transfer her care from the hospital in Detroit to a more local cancer center, which means no more 90-minute drives back and forth, and no more needing to stay in the hospital apartments for 1-2 weeks at a time. (At least until we get to the bone marrow transplant part of the process.)

People have asked what they could do, which is very kind and much appreciated. I don’t think there’s much we need at the moment, so my suggestion would be to look into donating blood. Amy needed a lot of blood products at the beginning, and will probably need additional transfusions, and it all drove home how important it is to have a well-supplied local blood bank.

Writing Stuff

On the writing front, I actually got a little work done on Terminal Peace earlier this week. Not much, but it was something. I’m hoping as the cancer stuff calms down a bit, I’ll be able to keep making progress there. But helping my wife to get well again and taking care of the kids is still the priority.

Thanks to everyone who boosted about Terminal Uprising coming out last week, and to those of you who’ve commented how much you enjoyed it and/or posted reviews. I haven’t been able to do as much promo this time, for obvious reasons, so I’m even more appreciative.

I’m still hit-or-miss on emails and such, but I’m trying to catch up and stay on top of things.

Depression Stuff

I’ve talked about my depression off and on. I’d expect, given everything that’s happened these past two months, that I’d be drowning in a nasty brain-weasel flare-up. Surprisingly, I haven’t seen too much sign of that yet.

Yet being the key word there. My response to crisis has always been to focus on helping the person in crisis and doing whatever I can do. I’ve been in that mode for two+ months now.

I suspect sooner or later it’s going to catch up and knock me on my ass. So I’m trying to watch my own symptoms, and to do what I can to take care of myself. Things like letting other people around town help out, or even asking for help when I need it. I also scheduled an appointment with my former therapist for next week, just to come in and talk and vent and see what happens. Then there’s stuff like sitting around and watching the second season of Dragon Prince with my son to relax and unwind a little.

I know I’m keeping some things stuffed down for now to help me function. But I don’t feel like I’m hiding from it. So far, this seems to be working.

Random Cancer-Related Observation

I’ve lost about ten pounds since this all started. This diet plan sucks!

Back Home For a Bit

Amy has gotten through the second round of chemo, which meant the hospital was finally able to discharge her to an acute rehab facility. (She’s been in a hospital bed for more than a month, so she needs some therapy to rebuild muscle and such.) Unlike the hospital, which was an hour+ from home, the rehab facility is only 20 minutes away, which means I’ve been able to split time between there and home.

There’s not really much else to report. From what they can tell, the chemo is doing its job so far. Amy’s in much better shape than she was a month ago. But we have a long way to go before we’re through. The current plan is for 3-4 more rounds of chemo, followed by a bone marrow transplant. We’ll be back staying at the hospital for the next round in a couple of weeks. Not sure if subsequent ones will be able to be done closer to home or not.

Thank you again for all of your support for my wife and our family. It means a lot to know we’re not alone.

Jim C. Hines