The other day Jacob said something to me and it gave me pause. He said that this whole summer has basically been a loss for him, and you know what? He's not wrong. It's pretty much been a mess for all of us, to be honest. We've been in a weird haze of medical challenges and mysteries that pretty much started in mid-June, and suddenly it's two months later and we're about three weeks away from school starting and haven't come out of it yet. That sucks. Seriously.
I've talked about most of the stuff here, but as a quick refresher--we had Jacob's high blood pressure and (supposed) reflux and Carter's mouth infection issue before we left for the Dominican, and since then it's been Jacob's ongoing shin issues, then stomach problems/glutening, then the concussion, and now an assortment of odd symptoms that had Jacob in a complete panic since late last week. Jacob has pretty serious medical anxiety at this point, and I can't say I blame him. For me, I can look back at the thousands of times I was convinced something was wrong with me, and probably only a tiny percentage have actually been something. So most of the time I can convince myself that any odd symptom is probably nothing because most of them have always been nothing. Of course, I know that means that someday my luck will run out, so there's always that bit of fear, but most of the time I can slowly but surely pull myself out of the initial panic and convince myself it's probably fine unless another concerning thing pops up. But for Jacob, so many of his things have been something--an irregular mole on his leg, Celiac Disease, a bone cyst, low iron and vitamin D levels, a sprained ankle that was actually a broken bone in his leg, lots of other ankle sprains, a few mild concussions, shin splints, and so on. The last 18 months or so has been a complete dumpster fire for him as far as his body goes. He has an autoimmune disease so I suppose it's not entirely surprising, but it's frustrating. He's convinced his body will never cooperate. And honestly, I can't tell him it will because I just don't know either. It's been a horrible run of bad luck, for sure.
This week's entry is likely some sort of mystery virus that he had convinced himself was lymphoma. He had a swollen lymph node in his neck, and he was a bit fatigued and his stomach was a bit off, but no fever. He was picking up random symptoms as the days went on--itchy skin, a sore back, fuzzy head, night sweats and chills. I told him that more than likely those were pretty much how a generic virus would go, and the swollen lymph node was probably a sign he was fighting it off just enough that it wasn't taking over completely. But of course all of those things matched up with lymphoma symptoms so he was panicked. I talked to him for about 45 minutes on the way back from a concert on Friday night (plus a few minutes while I was there) trying to talk him down, but he would not be dissuaded. I even reminded him on Saturday that when he got bloodwork done in June, everything was pretty much perfect. There was only one thing that was slightly off, but that could have been caused by dehydration, so I think that's a much more plausible cause of that than anything else. I highly doubt everything would have looked that good if he had something brewing, or that it would have progressed that fast. I could be wrong, but for now I'll choose to not go there.
It's hard to explain to someone who has health anxiety that you really just have to choose to block it out, at least for a period of time. You shouldn't Google, for sure, and you have to try to almost bargain with yourself to push it off for a few days to see if anything changes before you resume panic. In his case, he was begging to go to the doctor, but any trip to the doctor would likely be a "probably a virus but give it a week and let us know if it's worse" situation, so there was nothing to do but wait and see if anything changed. There wasn't a lot that would be "testable" so I really think they'd just make us wait. We've been through so many doctors this year and he's so annoyed with his pediatrician, and I feel like one more oddball visit is going to hit some sort of threshold where they start taking us less seriously and chalk it up to him being a hypochondriac. So, lacking an easy route to check things, you have to actively choose to let those worries go or try to convince yourself it's something less vicious, at least until it becomes clearer one way or another. Otherwise you will drive yourself crazy and probably make yourself sicker with stress hormones.
I also couldn't really tell him at the time that I was having similar anxiety issues in regard to Carter over the prior week. After my last post, all my worries got the best of me for a night. Like, really bad. But I've been watching him closely and I think the swelling is definitely down. It's not gone but I know it was SO noticeable for a while and it's much harder to see now. So I think that put my initial oral cancer fears to rest for now, though they riled up a bit again when I saw a story about a local baby who had a mouth abscess that wouldn't heal and turned out to be a metastasized tumor from adrenal cancer. That was not what I needed to see. But anyway, Carter's mouth is still trying to crack despite using Aquaphor twice daily, so I put him back on the antibiotic cream to see if it helped, and if I think it does, I will probably check back in with one or both doctors and see if that's a sign that the bacteria is still there and see if we should try the Cipro after all. If it doesn't help, I'll probably try the steroid cream again, and if that works, then I think we have to push for the Celiac test because that's a big possibility as to why that sore would persist. I will say Carter has been doing a great job trying to gain weight--he's up a couple pounds right now, which is encouraging. It's still overall a nagging worry thing for me, but I just needed that swelling to go down enough to remind me that if it's getting better in any way--since really bad things generally don't do that--then maybe it's something more manageable.
So, knowing how I've had to manage my anxiety, I've had to encourage Jacob to just give himself the ability to find and believe the lesser things to try to get himself off that constant stream of worry. Is there a chance it's something more? Sure. But more than likely there's a much simpler explanation. I think we were a little perplexed because he hasn't really gone anywhere lately (because he's been laying lower because of the concussion) where he'd be likely to catch something. But then he realized that last week when he went to a gym to get some shots up, he had a hangnail or something on his fingertip and he bit it to fix it. That gave him a very simple explanation of where the virus might have come from, and I think that helped. The fatigue got a little better Sunday, which helped more. He was still trying to put a name to it (mono was among the suggestions, but I don't think he was bad enough for that), but I said that there are a lot of random viruses that are just generic things with no known name. And I really think this is something like that. We'll have to wait for the lymph node to go down to feel significantly better about it, but progress is good. I also think that the lack of activity, the boredom, and the general cycle of worry and whatever else is just throwing his body off. I just know when I'm tired or sick or lazy, I just feel worse and worse if I wallow in it, and I think he had the perfect storm for that too, on top of whatever his body is fighting off.
But regardless, he's right that it has been a lost summer because we (and mostly HE) just went from one thing to another to another, and we've been stuck in this holding pattern waiting for everything to be okay. And now here we are almost through summer and we're still waiting. It makes me so sad to think about, honestly.
We're still not going on vacation, and our window is getting smaller and smaller. We pretty much have two extra long weekends to work with at this point, I think. I'm still planning on taking Carter to Cedar Point in a couple weeks, but I'm not sure it's entirely worth it because the coaster we were specifically going back for is still not open, but I know he has his heart set on going. I will gladly ride all of the rides again, of course, but it seems like a lot of driving to repeat last year's trip and not have that one new thing--although hopefully it'll rewrite some of the memories ruined by the COVID mess that followed last year's trip. I really would love to tack some stuff on to that trip so we could all go together (the big boys could just drop us off for a day or two and do other stuff like we did in Erie), but I doubt they'll get on board with that. We need to decide fast regardless. We have done some fun things this summer, but admittedly, my perspective is going to be different because I was in the Dominican already and they weren't. For the record, I still have Dominican pictures as my phone's home and lock screens but I sometimes have to remind myself I was actually there and it really happened. Sometimes it seems surreal. I think the violent jolt back to reality--right back to the ongoing health issues, the end of the school year, the whirlwind trip to Pittsburgh, and the subsequent COVID quarantine--makes it all seem like an alternate reality or something. So much build-up, a very quick dream-come-true, and a crash landing back at home--it was such a blur that it's easy to forget it happened.
So anyway, Craig and I had that adventure, but the boys' only excitement this summer was pretty much just Pittsburgh x2, and maybe the Blue Jays game back in April if you want to count that. Not insignificant, of course, but not enough if I'm sticking to the "live life to the fullest" mantra I picked up after COVID, given the lackluster summer prior and the travel challenges that followed. Ugh. I do love doing stuff as a family, so I would love to do something (almost anything!), but with time short and cost being a factor as well, it's just hard. Every time I ask I get a bunch of half-hopeful/half-sarcastic responses like Disney, Disneyland, Key West (because Old Key West at Disney is not an option), or any number of options that involve passports, which the boys don't have. And when I mention more reasonable options, I get some rolled eyes or yet another attempt at convincing me we need a puppy instead (yes, that campaign is still going strong...but so am I). So I'm not sure what we do at this point. I'd be happy with almost anything that gets us away and doing something, instead of yet another week of the boys sitting around and arguing and alternating between baseball outside and screens inside. At least they're doing a lot of it together, but still. I want them to have some additional fun memories from this summer because it's been a rough one, and downshifting from Disney two straight years is tough enough on its own.
And in case you're wondering, even *I* am struggling to downshift from Disney. I still have a lot of Disney in my feed, and knowing that a year ago we were gearing up for another trip, it's making me a little sad. I hold firm in my feeling that we should not go again this year, but I'm still a little bummed about it. It is magical despite the work and the expense and all the things that annoy me. When someone posts a dreamy balcony photo on the Old Key West page, or I see a new photo spot I'd like to take a picture of myself, or think about wanting to ride certain rides or see things before a bunch of changes take place at the parks, I get a bit wistful for how much fun we had the last two years. As we know, time heals a lot of things so I'm glossing over all of the things that made me crazy, but it's making this August a bit more bittersweet. Of course, a hurricane brushed Orlando again last week (similar to how it did when we were there last year), and I found myself grateful we didn't have that to worry about this time around. But yeah, I admit it, I miss it. I do think that a different trip could capture some of the same emotions, though. Our last two family vacations were both there, so is my affection actually with Disney or with the time away together in general? I had a lot of fun when we went to the Jersey Shore, too (despite the hiccups), so it's entirely possible I'm just longing for family togetherness and a change of scenery more than anything else. I'd like to redeem this dumpster fire of a summer and finish it off positively, but how? I guess that will be answered soon, one way or another.
Other than the stress regarding Jacob's mystery illness, it was an okay week and a pleasant weekend. Craig was gone most of the week for the college lacrosse championships. At least it was only Utica and not California like it was for years. Other than being the sole target of Jacob's complaints and obsessions, it wasn't too bad. It's a far cry from flying solo when the kids were little. On the bright side, Craig's team finally won! Rochester teams had made the finals quite a bit but always seemed to lose to this one team, and they finally beat them! Seeing videos of Craig run out in victory and raise the cup were pretty fun!
The highlight of my week was that I got to meet up with Mary on Friday night for another NEEDTOBREATHE concert. Our last one was almost a year ago at the Erie County Fair, so it was nice to get another one so soon, this time at the Del Lago Casino in Waterloo, NY, which was a nice mid-point for both of us. Of course, that hurricane that I mentioned that passed by Disney last week had made its way up here by Friday, and we were a little worried that the whole thing might be a washout. I was less scared than if it would have been snow, but it was a lot of rain in some places. I think we got less than we were supposed to, but east of us got it pretty good. Fortunately it stopped raining for the most part by the time we each had to leave. I hit a couple quick downpours en route and there were some pretty fantastic clouds along the way, but it was an easy drive.
We had a really nice dinner in the casino food court and caught up for more than an hour and a half ahead of the show. It's funny being in this phase of life, talking about body parts breaking and retirement only being about eight years away (for her) and college friends' kids going off to college themselves. We've been working more than half our lives now. It still doesn't seem like that long ago that we met, but in 10 days it will be 28 years. I have no idea how that's possible. While that still pales in comparison to my oldest friendship (41 years with Heather), it hits a bit differently. For so long she was a new friend, and now...she's an old one. I remember feeling surprised at how deep a four-year friendship could be, even just after those first few months--I went my whole life without this person and now I can't imagine it without her. We may not be as close as we once were, but in a phase of life where most older friendships have faded as life takes over, to have one that in-between phase of life (joined the party late, but also came before this current phase) that still feels like "home" every time you get together is pretty special. My parents have a couple they knew from college that they're still close friends with 54 years later, so I guess that's #goals right there.
The show was great as always. They are so amazing live and this show was fun because they weren't really promoting a specific album and could play whatever they wanted. I never thought I'd like a skeleton set decoration, but this color changing one was pretty fun.
They had lots of fun lights everywhere--old school style marquee type bulbs and all sorts of colors. It put on a nice show, as if the singing wasn't good enough. I always like this song live because it captures the fun of their shows. It's called "Great Night".
The lead singer Bear has been coming out into the crowd in the last couple shows. Last year Mary got to high five him, but this year we weren't quite as close to the walkway. He pretty much got trapped out there the entire song, though. Good man.
Another skeleton color scheme...
As I mentioned, I spent most of my drive home talking to Jacob about his ailments, but at least it kept me awake. I got home around 11pm, which wasn't bad, although still wasn't ideal since the boys were home alone all evening. I pretty much made sure they had dinner food they could prepare when they were ready, and took off as soon as I could after work. Jacob did call me for instructions but otherwise they were pretty self-sufficient other than still being up when I got home, but I expected that.
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