cancer

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.

Family Health and Ongoing Hiatus

I’m back home for the first time in a while, and I’ve been given permission to talk more about what’s going on. Last month, my wife Amy was diagnosed with cancer — an aggressive form of lymphoma, to be specific.

Aggressive, but treatable. We’ve done the first round of chemo, and the last scans showed some tumor shrinkage, which is a good sign.

This all started with a flare-up of lower back pain. Unfortunately, Amy has chronic back pain, and we’ve had flare-ups before. So the initial doctor visits just led to more painkillers and rest. It wasn’t until I took her to the Emergency Room last month that they discovered what was going on. By then we were dealing with a blast crisis (proliferation of immature white blood cells), dehydration, some organ failures…

I can safely say that was the worst week of my life.

I’m happy to say they were able to treat the immediate health crisis. The messed-up white blood cells have been cleared out, organ function is back to normal, dehydration and malnutrition have been addressed. We’re onto focusing on the long-term treatment plan now.

There’s no prognosis or percentages here. You can find survival rates for her particular type of cancer, but she’s significantly younger than the average patient. And five-year rates are based on patients who were diagnosed at least five years ago — we have five more years of research and advances now.

She’ll still be in the hospital for a while. She’s awfully weak after everything she’s been through. She’s not quite up for visitors yet, but she’s getting closer. I’ll be heading back tonight or tomorrow. I’ll still be mostly offline, and I haven’t written a word of fiction in more than a month, which is likely to continue.

To any of our friends or family who are hearing this for the first time, I’m so sorry. We’ve tried to update people, but Amy has so many people who love her, and my brain has not been at its best. Please feel free to text or email me.

My family has been holding up okay. Everyone has come together to offer support and help out, and I’m so grateful. The kids have been amazing, each in their own way. It’s hard, and that’s going to continue for a while, but we’re all doing our best to take care of each other as well as taking care of Amy.

She’s had really good care. We’re making sure that continues. So far, the insurance side of things has gone pretty smoothly. I’m not holding my breath for that to always be the case, but I’ll deal with that when and if it goes sideways. I’ve also taken care of things like her FMLA leave from work, and applying for short-term disability. The main priority right now is helping her keep getting better.

Oh, and I know the photos might be a bit odd — what can I say. Taking pictures is one of the ways I cope with the stress. Even with a relatively old iPhone camera.

I’m not up for answering a lot of questions online/publicly, since it’s not about me. And we’re not currently looking for advice. But your love and support and encouragement are always appreciated. Thank you.

Brief Update and Online Hiatus

We’re dealing with some family stuff. I may go into detail later, but for now, just know that blogging and social media are going to be sparse to nonexistent for the foreseeable future. I’m also going to be worse than usual about responding to most emails and such.

For readers wondering about book three, this does mean Terminal Peace is likely to be a bit delayed. How much is impossible for me to say right now.

I know this is … well, a bit ominous, and I’m sorry for making people worry without providing any specifics.

Love to you all.

Jim C. Hines