It's been 3 weeks since I last posted an update and am really touched by people reaching out here.
The situation right now is that we are in the "good week" - end of one treatment cycle and getting ready for the next. Wife is at the gym right now. I'm trying to stay focused at work, get things in order for next week, which will be the "bad week" (we are on 3-week cycle, so starts bad and slowly gets better, until the end when she is basically acting totally normal)
This is a bit more of a bullet-point post, as I've been collecting my thoughts and feelings as the time has gone on:
  • The impact of the first treatment was a bit harder than we expected. Day 0 was fine. Day 1, she went to the store during the day with her mom, but was fatigued. Day 2 she was in bed most of the day, either feeling nauseous or sleeping. I felt the real impact in the morning, trying to get the kids out the door and managing work. This was a day when usually we are both up and managing the kids, as it's one of the days when both kids have somewhere to be in the morning. I took some unexpected time off work throughout the week. Nothing major, but thankfully my project is running smoothly with me popping in and out.
  • It's been really interesting to observe who in our life has reached out, who has not. Nothing good or bad about it. Some unexpected people have been really generous with time, gifts, etc, and there have been others who have not communicated. Everyone dealing with the news in their own way. People have setup a meal train for us, which brings a lot of relief around making dinner for the kids and having food available.
  • There have been lots of ups and downs throughout this, and will continue to be. To me, it often feels like life is normal and then I'm brought back to reality. Having a regular day and then some test results drop and we go into a tailspin. For my wife, it has been much less normal, as she is the one who has been sick, in bed, etc.
  • During the days when I'm doing all the household upkeep, I found the easiest thing is to make sure I'm always doing something - wrangling the kids, checking on wife, prepping food, folding laundry, doing dishes, making food, doing work ...
  • As things progressed from the bad days into better days, I found that I was really tightly wound and wasting a lot of time, looking at Nostr, actually just staring at my phone for no reason, feeling a bit lost - there is so much to do and yet it feels easier to not do anything than to do 1 thing in an endless list. This feels okay to a point, I do need to relax my brain, find outlets so I am not just working or dealing with household upkeep.
  • I am definitely out of the groove that I was in during January. I had been going to bed on time, fasting, and hitting 5:30 gym no problem. Now I’ve been up late many days and struggling to get out of bed.
  • Haven't been drinking but started on THC again. I think it makes the chaotic evenings better with the kids (I am more fun, less critical of them) but should stop using it at other times...
  • I've been randomly screaming. Sometimes it's words, sometimes it's just sounds. Thankfully only happening when I am home alone or in my car, but it a good release, hopefully not me going crazy.
  • We actually stayed out of town in a small cabin for ~48 hours this weekend. Was a lot of effort for a 1-day getaway but was good to have the family time away from the house.
That's all I have for now. Will add more if I think of anything.
If anyone has any questions or I can help anyone facing similar situations, please let me know.
I don’t want to comment too much on the specifics of your situation, lest I feel I’m psychoanalysing your actions. I just want to share that:
  • sometimes, I heave a heavy sigh or shout out a grunt in front of both my kids. Minus the wife ofc! Parenting is the least fun n inconvenient thing ever, and I’m still grieving over the loss of my once-vibrant (haha) social life. you are keeping it very well by not doing it in front of them.
  • I find it useful just to zero in on one personal thing I wanna achieve every day. Then if I waste the rest of my leisure time doomscrolling or dazing, so be it. At least I got my one thing done. Today was posting a book review here.
  • I think staring blankly at your phone could be your subconscious telling you to slow down process stuff let emotions simmer down n choose the next course of action. So as @siggy47 said, cut yourself PLENTY of slack, go gentle on yourself
  • I will gladly down a few drinks with you. Can’t do it in person but will do it in spirit 🍻
Life is tough, but so are you.
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I've noticed your other posts about parenting and wanted to say, there is a lot about parenting that is hard, but I hope you can find some joy in it. I really love spending time with my kids - and of course that shows up in different ways and for different lengths of time. Sometimes I just can't take their shenanigans, and sometimes it's a beautiful dance.
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A thought about being "out of the groove": we train so that we can perform well when called upon. It sounds like you're performing very well.
I'm glad to hear you have so much support and hope you can enjoy a little bit of normalcy this week.
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we train so that we can perform well when called upon.
What a cool, succinct way to put it.
Makes me wonder what happens if we flip it: am I training properly for the things I will be called upon to do?
I don't like where this is going.
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am I training properly for the things I will be called upon to do?
Bruce Lee's rationale for doing all kinds of bizarre workouts was that you never know what capacity you might need.
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we train so that we can perform well when called upon.
Can I use this quote in a website I'm working on @Undisciplined ? I can credit you and link to your profile.
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Of course
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Thanks for the update. Cut yourself plenty of slack. Whatever gets you through this time will make everyone happier. There will be plenty of time later to work on any bad habits you might want to change.
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I was wondering about you and your wife the other day. Glad to hear you are currently in the "good week". Stay strong. You are in the midst of the storm but you are getting through it. All you need to do is get through it.
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And whom do I call my enemy?
An enemy must be worthy of engagement.
I turn in the direction of the sun and keep walking.
It’s the heart that asks the question, not my furious mind.
I pray, everything be normal again.
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Thank you for updating. I've had enough friends go through treatments to get the good/bad week thing. I'm also really glad to know folks set up a meal train. We were part of one for a friend who lost both her parents in a very short time, and I know how helpful those can be.
As things progressed from the bad days into better days, I found that I was really tightly wound and wasting a lot of time, looking at Nostr, actually just staring at my phone for no reason, feeling a bit lost - there is so much to do and yet it feels easier to not do anything than to do 1 thing in an endless list. This feels okay to a point, I do need to relax my brain, find outlets so I am not just working or dealing with household upkeep.
I'm sure you know this intellectually, but the caretaker getting self-care is incredibly important! You need downtime, and while both THC and screaming both may help (and it sounds like the former is particularly helpful with the kids), non-productive vegging is totally valid as well, if it works. Find a game, a light read, whatever, and during times when you're not actively caretaking, let your brain have some downtime without feeling guilt. Always having something to do is good short-term, but burnout can be awful.
You and your family remain in my thoughts. Wishing you the best.
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