Another busy day

Yesterday was almost as busy as Thanksgiving but in a totally different way.

I had to take Dylan to hang out with his friends early in the afternoon. When I got back from doing that, I tried to nap, but it was cut short when J came in to lie down next to me and ended up having an extended coughing fit.

So I got up and went out to do a whole bunch of errands, like picking up some jeans I ordered for Dylan, picking up Christmas tree lights, and going to Costco to get bottled water and Gatorade Zero for Dylan.

It was the kind of day where I got home with food for me and Chloe just 15 minutes before I had to leave again to pick up Dyl from his friends. Whew!

I hope I will get to rest more tomorrow, since I have to do the long round-trip drive again on Sunday to take Dyl back to school.

I was reading earlier about how they have discovered a new variant of the Covid virus in S Africa and it appears like it might be resistant to the vaccine.

Wouldn’t that just be the way of things? I mean, you can call me a doomer if you want, but I’m not totally surprised that we’ve had an outbreak like this and that it’s gone on for almost two years already. I always kinda expected that something like this would happen during my lifetime.

What I didn’t expect, of course, was that this would be happening at the same time that my husband is fighting for his life. It makes it all so much scarier.

I wish we could be going out and doing fun stuff together (at least when he was still well enough for that.) It just feels like we’re wasting any potential opportunities to make memories together.

And though I know how to talk myself through my anxiety pretty well by now, that doesn’t mean that I don’t feel it.

I wish things could stay the same, including being financially able to help both my kids and total strangers. But I know that’s going to end and I’m really sad about that, along with all the other things I have to be sad about.

Thanksgiving

Well, I survived making my first Thanksgiving dinner almost completely by myself. Dylan helped me a bit but I did most of it. And it wasn’t even extremely late or anything.

Amy, her boyfriend, and Chloe worked together after dinner to put up the Christmas tree for me. It ended up being a fairly quick task with three people working on it.

It was just a really good day. Amy and her boyfriend were both very lovely and helpful. I think they were surprised that I was doing the whole dinner by myself (or at least Amy said she was.)

Honestly, I pushed myself pretty hard and I’ll definitely need some rest, which I probably won’t be able to catch up on until after I take Dylan back to school on Sunday.

It’s been nice having him home again, though, and it will be even better when I go back to get him in a couple of weeks for the semester break. He’ll have about a month off, which will be really good.

He’s finally finding his niche on campus. He says he now feels like he has two homes: at our house and at A&M. Given how rough his initial adjustment was, I am just so relieved that he feels like he’s at home when he’s on campus.

I still don’t have any sense of what lies ahead with J’s health. To be honest, I still kind of fear the worst, based on his signs right now. Even Amy had to ask him several times if he was okay yesterday.

But whether or not he gets better is something I can hope for but not control. And yesterday, having everyone over for Thanksgiving dinner was kind of a way to prove that I’ll be okay either way. I think that may have been a bit of a relief for us all.

Hopefully, my husband will have a lot more holidays with us. But if the worst happens and he doesn’t, I have a little better of a picture of what life in the after will be like. Some of the minor details still aren’t worked out yet (like how I will afford to stay here) but I think I will have my kids to help out. And for that, I’m very grateful and lucky.

There are whole new firsts

I’m actually making most of our Thanksgiving dinner by myself, with some help from Dylan (who really loves to cook.)

Yes, it’s my secret shame that I’ve never done this before. I never had to; J always did it. But this year, he’s on chemo, and probably won’t even be up to eating much, let alone cooking it.

I’m also going to put up the Christmas tree tomorrow, with the kids’ help. Again, it’s something that J has always done, and it now falls to me. It’s really good to figure out how to do these things and I’m honestly pretty embarrassed that I’ve never done them before.

At the same time, though, I also feel kind of weird about having the torch passed to me. At least with the way things look right now, I’m not sure if J will ever be well enough again to take them back. And that’s really scary.

I feel like I can do these things, although they exhaust me. Amy and her boyfriend are coming over tomorrow and so is Dyl’s girlfriend. My house will be full and hopefully lively, even though my husband is going to be pretty out of it.

I’m kind of getting a glimpse of the future, and I don’t know how distant that future is right now. I don’t know if this is the last year I’ll have J around at the holidays or not. But just the fact that it very well could be the last brings up all kinds of feelings for which I don’t even have words.

Homecoming

My youngest son is now back home until Sunday. And the kinda funny thing is that he only has two weeks left of the semester after he goes back, so I’m going to be making this trip again in a little over two weeks.

It’s such a long drive, and even more so now that the sun goes down so early. Honestly, it’s completely exhausting to make the trip.

I got to talk to him a lot on the way back, though. It turns out that most of why he’s been less communicative lately is because he’s not on his phone as often. And ultimately, that’s a very good thing.

He’s not as miserable anymore, either physically or mentally. He’s made some very good friends on campus and is talking about next year like it’s a certainty that he’ll be there.

I talked to him a bit about the alternative of living at home and commuting to a local university that’s supposed to be less conservative and have a more diverse population. I acknowledged that driving him back and forth from there would be difficult but at least he could live at home with his cat.

He pointed out that being a minority at a fairly conservative university actually makes the minority community stronger. (As evidence, he shared with me some jokes he has with his FLAKE friends on their private Discord server, which were making fun of some of the conservative normies on campus.)

FLAKE is his freshman group of LGBT kids and it stands for freshman leaders for acceptance, kindness, and equality. He’s made several good friends in the group, including one who he says reminds him a lot of Chloe.

He’s getting out of his dorm room a lot more often and studying with friends. He really is starting to have the kinds of social experiences he’s always wanted to have.

I told him that the return on investment for an engineering degree from local university vs A&M wasn’t very significant and he said he highly doubted that because the Aggie ring (which is expensive and he’ll get it as a senior) opens doors in itself.

I do believe he’s probably right. But more than that, he believes it. He believes that the Aggie ring is worth pursuing.

We talked a bit about my husband’s health and he said that if my husband’s health takes a turn for the worse while he’s in school, he would have to take a semester off. But he did not say that he would quit school altogether.

What I want more than anything is to keep this house. When he graduates, he plans to stay in the area and says he’d live at home. The rent would be cheaper than getting his own place and he could work on paying down his student loans.

All of it sounded pretty good to me. I just have to make sure I can stay here that long, even if my husband doesn’t.

I’m trying to see myself as capable and in charge. I want to keep sending him money every month so that he doesn’t have to get a job while in school. To me, that is such an extreme luxury and privilege, and I’m so grateful to be able to give it to him while I can.

He’s really got a good chance to make it and I want to do everything I can to help.

The college kid comes home

Tomorrow I’ll be heading down to get my son from college to bring him back for Thanksgiving break. It will be good to see him again, though I’m always a little nervous about the drive.

I guess I’ve come a long way from the “me” of almost 8 years ago, when I drove from Michigan to Texas all by myself (and in a much less reliable car, no less.)

My son turned 19 yesterday and it was the first time he celebrated a birthday away from us. That felt a bit weird, to be honest.

I’m not sure what it’s going to be like when I pick him up tomorrow. Lately, he hasn’t even responded to my messages every day and I feel more distance between us. I don’t know if that’s because he’s having too much fun or if he’s having too many worries and doesn’t want to burden me with them. I guess I’ll find out tomorrow.

My oldest daughter told me she got a new job that she starts on Monday. I’m really excited for her and I hope it will be a good fit for her. She’s going to be the “director of first impressions,” which is basically a fancy title for receptionist and executive assistant.

I’m honestly totally thrilled that she got such a traditionally female job. And I think it will play to a lot of her strengths, like being friendly and organized.

Chloe has an interview next week at Starbucks, too. I really hope she gets it. It will be her first time interviewing where she presents herself as female. I hope it goes better than her past interviews have, which were for jobs that she didn’t get. But for those, she was still presenting as male and I suspect that her discomfort with herself was palpable in the interviews.

I’m still worried about my husband’s health, of course. But there’s nothing I can really do about it. I don’t know what the future holds at all. I’m scared of it, to be honest.

Really, all I want is to feel like we still have some good times left. Not knowing if we do or not kind of drives me insane, teetering on the edge of the unknown.

Darkness falls

With a title like that, I should clarify that I am not currently super depressed. But I’m also not doing particularly well, either.

My husband’s health is really scaring me lately. He’s not doing especially well, though he says that’s just because he’s so off-schedule with his chemo because his ANC (a measure of his immune system) has caused him to miss a cycle. Or is it two that he’s missed? I’m not sure.

I know that he has a lot of pain in his knee (no one knows why) and pain in his side. The pain in his side might be related to his last surgery or it might be related to his kidneys swelling and pressing on his tumors.

I just know that he has to take Norco pretty much every day now, sometimes several times a day, and he says that it doesn’t work very well.

I’m trying to be optimistic and hopeful but it’s honestly really hard for me to do. Being optimistic sometimes feels like I’m trying to trick myself.

I wondered whether or not to put up the Christmas tree this year. J’s always done it and as the kids have gotten older, they show less interest in helping. And I thought that I had done more to decorate it last year but he doesn’t remember it that way. He said that last year “broke him,” which just made me feel so sad.

So I’ve already arranged with the kids for them to help me put it up over Thanksgiving. I don’t really know what I’m doing but I need to figure it out. I ordered some new ornaments and decorations, too.

It suddenly feels like what if this is his last Christmas with us? I certainly hope that it’s not and that when he goes in for his next scans in a couple of months, they will show that his cancer is responding really well to the treatment regimen he’s on now.

After all, this treatment regimen got him to NED status before, and maybe it will again.

But at the same time, he’s never been this sick and in this much pain before, either. I just want him back to the way he used to be and I don’t know if that’s going to happen.

More of the slog

I’m just trying to get through on a daily basis but that’s getting harder to do.

I have plenty of work, which I’m going to have to start asking them to send me less. I really hate to do that. But the problem is that the Social Security Administration is now watching me pretty closely and I don’t want to risk losing that.

I guess my parents were right when they said I didn’t want to do anything that might jeopardize my disability payments. After all, if I’m on disability, I’ll get my federal student loans forgiven (not the private ones though, of course) and I’ll get J’s survivor benefits at age 50.

I feel like I can do a bit more work than I am. But making enough that would be more than disability and survivor benefits would be way more than I could do. That makes me feel kind of trapped, to be honest.

Disability isn’t much. Medicare is not great either. And I’ll have to find a way to buy my own dental policy. But the thought of losing all of that is much scarier.

Lately, I’ve really been worried that J’s going to die. I hope this won’t be our last Christmas together but you never really know.

He said he’s not scared of dying and I’m really glad of that for him. But I’m scared that if I think of death as too peaceful, I won’t have the strength to go on.

I’m scared of trying to go on without him. I’m scared that I’ll have to move out of the place we’re renting now for lots of reasons—the biggest being that I don’t know if another place will rent to me. And also this house feels like home, since we’ve been here for more than 5 years already. Plus there’s also the fact that our landlord hasn’t raised our rent in that time and we’re now paying well below market rate.

Any time I think of having to move, I think about where else I would go. Obviously Michigan is out of the question. But with so much upheaval, I don’t want to go anywhere—at least not in the next few years. I want Dylan and Chloe to have this as their home base for as long as they need.

And maybe, hopefully, J will still be around. When Chloe officially changes her name and gender legally, she plans to get certified as a medical assistant. That’s not until next June, though.

And Dylan…well, his fate is still up in the air, too. I would love it if J lived long enough to see Dyl graduate from college. But right now, that doesn’t seem as probable as I thought it was a few months ago.

I know I have some resources available to me if things get really bad. Like Dylan mentioned that he might be able to move in with his girlfriend and her guardian if Chloe and I have to get a 2-bedroom apartment. But I really, really don’t want that. I want to keep my home for as long as I can.

I want to keep everything just how it is now, minus the amount of pain my husband’s in. And I’m really afraid that might not be possible.

There’s also the fact that I realized that I still have a spending problem, even though I’m not on the Abilify anymore. And I really, really need to learn how to live on much less than we earn.

I’ve got a budget program that’s supposed to solve everything but I haven’t had time to do it. I need to just find a way to get that done. Maybe that will help me feel like things are in control again. I already have more than what I need. I probably can’t really afford to keep helping people as much as I do, either.

I have to learn a tightened-down manner of existence now, before I have to do it for real.

Another anxious day

My husband worked from home yesterday because he wasn’t feeling well enough to go into the office. Unfortunately, he has to go in tomorrow and I just really hope he’ll be doing well enough.

I slept a really long time yesterday, which was much needed. But when I woke up, all the anxiety came flooding back in.

On the positive front, Chloe has an interview scheduled with Starbucks in a couple weeks. And she switched therapists and her new therapist is much, much more helpful than her first one was. I’m proud of how well she’s doing advocating for herself.

I realized that the reason I want Dyl to move back home is for me, though. He wasn’t able to call like usual last weekend because he was hanging out with friends. Those friendships are what will make him more likely to stay there and I know that’s a good thing that he needs.

It’s me that misses having him around here and I realize that those feelings aren’t necessarily reciprocated. And I know that’s the normal order of things and I don’t want to take it away from him. I know he still loves me. But this time of his life isn’t all about catering to my “fee-fees” and it’s my job to get used to it.

Realistically, even if he were to move back home and transfer to UNT, I would have to drive him and that would probably be harder on my health anyway.

Still, I can’t shake this feeling of impending doom about my husband’s health. I don’t know if there’s any validity to my feelings of doom or if they’re just fears. What I do know is that we’re about halfway through the five years they give for life expectancy and things look quite a bit worse than they did a year ago.

I have to start really thinking about what I’m going to do and where I’m going to live when he’s gone. Not because I think that will happen soon but because it’s now a lot easier for me to envision him taking a sudden turn for the worse and not coming back from it.

I’m still really hopeful that he will make it back to NED status on this chemo regimen. But I no longer count on it. Things just feel too scary.

Anxiety again

It’s weird because my husband was doing a bit better yesterday and I finally got to talk to Dylan (after about 2 weeks of not doing so.) I should be calmer than ever right now but instead I’m even more anxious.

I am skilled enough at dealing with my anxiety to know that I’m not living in the present moment. Instead, I’m feeling very anxious about the future and what lies ahead for me.

I now can admit that I really, really want Dylan to drop out of A&M, take a semester off, then go back to school at UNT and live at home. That would make so many things better. But he has to come to that decision on his own.

I feel like I am overwhelmed with things to do already. I also have too many possessions and need to scale way back.

I want things around me to be more streamlined and organized. Basically, I just have to make the time to do that streamlining and organizing.

I think that a big part of that is feeling like this won’t be my home forever, like I need to start preparing now for when I’ll have to move out because I can no longer afford it here.

Since there isn’t really anything about J’s immediate health that makes me think about that, maybe it’s getting the letter from social security about having to keep my earnings low.

Or maybe I am more freaked out about my husband’s health than I want to admit. I feel like at any given moment he could die and then what would I do? It makes me feel like I need to go into survival mode now, which I actually don’t need to yet.

But how will I know when I do have to make that switch to survival mode? And will I be able to adjust in time? Knowing that the day is definitely coming but not knowing when is nerve wracking.

Trying to get through

My husband has not been doing well lately and it’s making me really worried.

He has really bad neutropenia, which essentially means that his immune system is dangerously low. He’s been fighting off a low-grade fever for a few days. I’ve been monitoring it closely because if his fever goes above 100.3, he has to go in to the hospital. Basically, if he contracts anything at all, it could potentially kill him.

I have to admit that I am taking this very seriously and it worries me a lot because I feel like he’s much too close to dying for my comfort level. I have anxiety on good days—this is almost more than I can bear.

Chloe finally applied at Starbucks yesterday. She took the initiative to do so herself, which I think was a crucial part of it. But a big part of her reasoning was seeing how sick J is and how worried I am about it. She said that she at least wants to be able to contribute enough money to cover some of her own expenses.

More importantly, we don’t need any financial help from her now, but she said that if we get to the point where we do, it would be a lot better if she were already working.

On a somewhat similar note, I just want to go pick up Dylan and bring him back home already. But I can’t really do that; it has to be his decision. I haven’t told him yet about J’s health. I did ask him by text last night if he wanted to be in the loop about my husband’s health but he hasn’t responded yet.

On the one hand, all of this worrying may be premature. It’s extremely stressful and is taking a major toll on my neurological health but it might not be indicative that he’s in the final, downward decline yet. In fact, we’re really hoping that taking this particular treatment regimen again will get him back to “no evidence of disease” status, like it did before.

At the same time, the side effects of the chemo itself are scary. Like the “bronchial thickening” in his lungs that makes him have horrible coughing fits all the time. I don’t know if that will ever go away or if he’ll have it for the rest of his life.

I really wish Dylan was home. Part of that is that I know he’s not particularly happy at school to begin with. And another big part is that I just want him closer. Having him be 3.5 hours away just feels like too much.

J did finally seem somewhat open to some of the complementary suggestions I made last weekend, in particular supplementing with a type of mushrooms that are supposed to boost the immune system. They’ve been used in conjunction with chemo in Japan and China for 30 years, so there’s a lot of information about them. He will have to talk to his oncologist first before he tries them and that will be a couple weeks away. I don’t have any reassurance that he’s really going to try them but this is the most open he’s been to any complementary medicine I’ve suggested. That itself gives me a small bit of hope.

Basically I am just trying to hang on by my fingernails and it doesn’t feel like I am able to do enough. I have so many things to do around the house and can’t get them all done. I’m really not holding up very well and I don’t know how to get myself out of this.