Yesterday morning, at the last minute, my Hema Dr.’s office called to cancel my follow-up appointment because my doctor was sick.  So I had to cancel my prescheduled ride, and reschedule the appointment to the end of November, so as to be able to arrange another ride ahead.  So the suspense continues to kill me!  And possibly a whole buffet of cancers, who knows.  Oh well, it gave me a chance to try to catch up on sleep, which has been eluding me.

I’ve been trying to test my wonky leg (and keep my weight down) by taking walks to stores for stuff I need.  It works out that there are no grocery stores within my walking distance, so I can’t gain it all back!  So far the reinforced leg is holding, as is the weather.  There are even a few trees(!) on the way to CVS, so I could take some colorful photos of my pedestrian life.  Read this and sleep!

As it turned out, we had our own private sukkah-deconstruction-and-beer party!  K mowed the lawn, while Avdi and I took down the sukkah.  When the other kids came out, it had conveniently disappeared!

I played with S and Y, and they even miraculously played with each other.  Some Barbies (including an amputee) took a bath and sunbathed (rated MA for nudity).  Despite all my symptoms, I felt pretty relaxed there.  Avdi drove me home later.

I finally have my new digital scale, so I can monitor my weight.  I couldn’t believe the good news: 125.6.  I don’t get enough exercise (or balanced diet) lately, so I need to keep myself on track.  My goal is 120.  I walked to the store and back, and my leg (fortified by two ace bandages and an ankle brace) didn’t even give out.  I’m going to stay healthy if it kills me!

Tomorrow I find out my fate at hematology.  I guess it’s too late for luck, but positive thoughts are welcome.

I finally got back to Avdi’s for erev preps and overnight.  The kids had a long weekend off from school and were all home.  Everyone, including me, seemed calmer and friendlier.  Maybe it was just the time off, or maybe something different about me.  I know I’m just getting glimpses, while Avdi gets the whole picture, but there were no meltdowns or tensions to speak of while I was there.  We were all just being a family, in this gorgeous St. Louis fall weather, taking a moment to soak up sun.

We all had a pleasant Shabbat meal together.  I got in the cooking “zone” and the results got high ranks.  I think it did our morale good.  E and Y separately went out to hang out with friends.  S didn’t give me any trouble.  Avdi even got to go out last night with friends and unwind and not have to worry.

Today we were out in the sukkah feeling a little sad that it had to be dismantled, as every year.  So I suggested maybe having a modified sukkah-deconstruction B&B tomorrow, so Avdi could have friends and some help, make a fun occasion of it.  I’m hoping that will happen.  It really was a beautiful sukkah, even if we couldn’t spend as much time as we liked in it.

I have lots of photos to make up for lost time.  St. Louis really is an autumn town, warm, breezy, dazzling sun, and the leaves not even in full color yet.  Still lots of flowers blooming, especially natives.  We even had a fire weather warning, it’s been so dry.

Keeping perspective, with all the crises happening in the world and down the street, on a scale of 1-10, my small worries don’t even make the scale.  The test results, however dire-sounding, are as of yet still undiagnosed officially.  I had to cancel my double vax (COVID/flu) because a vertigo attack was threatening, but it’s not full-blown.  My cough got worse, but I’m just self-medicating.  I can’t do much, with all the dizziness.  Just stay home, isolated, and try to get better.

Down the street, Avdi is struggling to keep it together, with little to no help, and overwhelmed with everything.  Even with recourse to solutions, he literally has no time to schedule yet another plan of action, meeting, or appointment to fix problems not of his doing.  The schools are not managing to provide the disability support and accommodations they agreed to, so the kids are struggling, which puts more load on Avdi.  That’s just a fraction of what he’s going through.  Add on no real help from outside, exhaustion, and extra work to keep it all financed–it’s not humanly possible.  Yet what choice does he have?

Out in the world, polarized factions are all justifying and rooting for their side, screaming for more revenge and genocide.  The side with the biggest guns and firepower “wins”.  Never mind the horrific humanitarian crisis and cost, another holocaust.  When has this escalating violence ever solved or resolved anything?  We’re like outraged apes throwing shit, only it’s missiles and bombs.  Very rational.

It’s easy to get caught up in facing and bargaining with your own mortality, when people all around you are dealing with much more immediate, frightening, desperate situations.  So for now I’m concentrating on getting better this week so I can jump back into the fray.  There’s plenty of time next week to find out my dire fate.

(Arnold Lobel, F&T Are Friends)

It’s a little premature to panic over my test results.  I can pick out the dire-sounding numbers from  all the Greek and picture me riddled with cancer, but I’ll wait on my doctor to interpret the scan and give me the news, bad or good.

For now, I’m preoccupied with more immediate symptoms.  It’s an unusual Shabbat when I’m not at Avdi’s baking, cooking, and cleaning.  I know he desperately needs help, which makes me feel worse, but I’m sure I’ll be back.  What he really needs is beyond my capacity, unless I could become a village.  Or the 50-foot woman, from all the radioactivity!  Right now I just feel like the crawling fried egg (a.k.a.”The Crawling Eye”).

I’m not sure if I’ll go peacefully or fight–I guess bottom line is whether I can afford all the treatments, and if it’s worth all the side effects.  I hear they’ve come a long way with rad/chemo.  But again, too soon to tell.  One thing I resolve to do, is not become one of those pathetic whiners.  If anything, I’ll become more thankful for every minute, and hopefully improve my sense of humor.

The first hour of a PET scan appointment is just being shot up with radioactive sugar and waiting around in comfort for it to circulate…in a closed-off room because you’re radioactive!  The actual PET scan only takes about 10 minutes in the cylinder, being scanned for concentrated areas of radiotracer that might indicate cancer.  It’s almost anticlimactic (until whenever you get the bad news).  So I’m in that limbo period of blissful ignorance.

Well, maybe not blissful, since I feel like crap from being sick and a sleepless night.  I dragged myself there, but the latest volunteer driver was super nice and encouraging, having worked in healthcare, and also encountered cancer herself.  She took the time to sit and talk about concerns I have, and how to deal with them and make decisions in small steps.

Well, back to bed with me.  Fortunately my next adventure isn’t until Sunday, when I have to attempt to walk to and from CVS to get the latest COVID/Flu double whammy, which will probably knock me back in bed until the next doctor followup.  It’s an exciting life I lead.

I still feel fortunate.  I have a roof, a bed, water, food, enough money and insurance to cover most of my expenses so far, and family nearby.  I don’t have to fear losing those to stray missiles and ballistics every second of my life.

Notice I have intentionally not weighed in on the current Mideast escalation.  Lots of people are doing it already.  If you’re curious, see my son’s posts on the subject–I basically agree, and not because he’s my son.  He just nails it better than I ever could.  Also we’re very Jewish, so calling us “antisemitic” isn’t even logical.  BTW, semitic refers to Palestinians as well, read your history.  Anyway, here goes…

Two evil fascist tyrant governments have been going at it for almost a century, trying to bomb each other into oblivion, while innocent (or complicit, whatever) civilians on both sides are annihilated.  As the military tech and terrorism at the top increase, so do the atrocities and devastation.  It’s a vicious loop–eye for an eye–it never ends.  People on both sides are the casualties of endless war.  There is no easy fix for such a complex situation, or it would have happened decades ago.  This is just the inevitable spiraling out of control.

If you are Jewish or Muslim, watching from the safety of here with outrage and grief as your people get brutalized, it’s natural and human to support continuing vengeance upon the other side.  But in a way, it just helps fan the flames of irrational hate and separatism that incites more segregation and persecution.  Sounds a lot like apartheid to me.  (I didn’t say that.)

That’s all I have right now; just thought I’d throw my subtle two cents in there for the record.  I’m officially sick today, trying to feel well enough to go get my PET scan tomorrow.  Even if I could reschedule, I’m getting laryngitis and can’t talk!  I obviously can’t get to yet another doctor or more drugs easily.  So I’m hoping homemade Jewish penicillin (just to stay on topic) does the trick.  (I’m sure there’s a perfectly effective Palestinian version, that is, if they were able to access groceries.)  (Subtle.)

I’ve been getting to experience just a fraction of the complicated bureaucratic disruptions my son has to deal with every day, like he can just take time off from full-time work and caregiving.  How could anyone in that position not be overwhelmed?

He’s delegating some admin tasks like appointment scheduling and researching doctors and case management to me, which is something I’m fortunately able to handle to some degree, especially while I’m just at home not feeling at my best.  When you add IT issues, legal formalities, and incompetence to the list of otherwise straightforward business, you’re talking even more time he literally doesn’t have.  So anything I can do to help is welcome.

Even two-parent households struggle with juggling jobs and kids, but in an inadequate social construct that doesn’t serve or support single Dads of multiple dev-disabled kids, it’s unsustainable and overwhelming.  Humans aren’t intended to singlehandedly balance such an impossible load. But in our misconceived, deluded culture, we still expect humans to labor under this illusion of solitary self-sufficient super-parenthood.  There’s no place or allowance for a community of mutual aid.  Just government or private agencies that are overwhelmed and dysfunctional themselves, or friends and neighbors isolated in the same boat.

I’m not really going anywhere with this, because solutions are hard to come by.  Each one requires more time and more money to line up.  Multiply that by four kids with four different sets of conditions and demands, states not forthcoming with the documentation you need, a district not equipped to handle your autistic son’s behavioral issues, several schools at once demanding your time, on top of your work that’s suffering, and a household to manage, and there’s not even time for the inevitable nervous breakdown, let alone mental health respite.

Meanwhile, S, who is suspended from school again, was home being sad and stir-crazy at Avdi, so they came and got me and we went to a playground with lots of things to do.  Avdi sat at a picnic table and got work done, while I sat and watched S.  There was only one incident, in which he kicked a tiny girl in the sand play area for some minor “infraction”, but I managed to get S to walk away, reminded him kicking wasn’t appropriate, and got him to apologize.  After that, he played with the kids more cooperatively, even making concessions.  He doesn’t quite get why much younger kids don’t behave the way he expects, or that physical aggression is not a solution.

S’s cough was getting worse (he just started antibiotics), and I still didn’t feel so great, so Avdi dropped me back home, where I was able to resolve another [Dr. appointment for S] assignment.  Also, some used sci-fi books I had ordered arrived, which is all it takes to make me feel better.

Here are photos of our playground adventure.  S likes to strike a pose!

No gradual fade from summer to fall here!  One day it’s in the 90s, the next it’s cold.  Days barely making it to 70, and 40s at night.  I put my hoodie on for the season, so it’s official.  I think.  You never know, here.  I caught a break from the night sweats, but not the monster nightmares.  It’s Halloween all year, in my brain.  A Lovecraft Fest.

I feel a little under the weather, after the last session with S, which is unavoidable.  It comes with being a Nomi.  I just need to stay well enough to go to the next specialist appointment to find out how I die in the end!  Still, I need to walk to the pharmacy to get more DRUGS!  If my leg holds out.  I need the exercise, because of my leg handicap.  Catch-22.  My life in a nutshell.

Here is my apartment yesterday afternoon, as the sun sinks sooner and a cool breeze chases out the stagnant funk.

I spent the morning hanging out with S, playing, and even watching (livestream) the unrolling of the entire Torah scroll across the sanctuary and out the door of CRC for Simchat Torah, complete with klezmer band.  It’s always a fascinating spectacle, like your history flashing before you.  Avdi got a chance to just chill without even having to break us up.

E had taken over the kitchen baking more huge batches of delicious cookies.  I caught a moment to drink my coffee in the sukkah.  It was actually cold out.  K on his own initiative has volunteered to help mentor and supervise kids in his free time to work toward earning free two-year community college tuition, which is impressive.  That’s in addition to all his other extracurricular clubs and activities.  Y has been unusually quiet, even reclusive.

I’m back home now, with the window wide open, and probably with S’s cough germs, but I figure by now I should be fairly resistant to all those typical routine bacteria–even the Feared Tardigrade!  It’s the big contenders I may have to brace myself for.  I’m in that pre-bad news ignorance everyone wishes they could return to, so I’m enjoying it while I can.