life in the time of corona (virus)

A tip of the hat to Gabriel Garcia Marquez, who wrote Love in the Time of Cholera and provided the inspiration for the title...

In truth, the overall structure of my life hasn't really changed that much, to be honest. I left my job four years ago after Himself's initial cancer diagnosis, because trying to help him, keep an eye on the Queen Mother, and hold down a full time job to boot felt like too much. I have been practicing Staying Home pretty much the whole time.

I will say the timing of the Queen Mother getting back on "deluxe" Medi-Cal could not have been better. (I received my first paycheck today. I found that I need to restart direct deposit into my account, since I didn't realized the check had been mailed to me until I called to see where it was!) She was re-evaluated by In Home Supportive Services just before all hell broke loose, and will actually be getting more hours as of April First. In this way, I am very blessed. Once I get a few bills taken care of, I will see about paying some of my blessings forward.

The fact that casual trips out of the home are all but verboten is a bit of a challenge. Fortunately we live in a gated condo complex, so our exposure to the "outside world" is at a minimum. I joke that we were practicing Social Distancing before it came into vogue. I'm able to step out and take a lap around the complex when I feel like getting some fresh air and sunshine. I'm not the only one who does, as the hour right before dinner recently looked like "social hour," with family units keeping to themselves as they walked. I can adjust my timing accordingly, depending on whether or not I feel like talking to anyone.

The biggest adjustment I've had to make is to runs to the grocery store. I am working on consolidating runs to only once a week, and making do if I run short on something before the "official" day. I'm also rotating the stores I go to, to minimize my exposure at any one location. I wear gloves when I go get the groceries, as the Queen Mother will be 78 on Sunday, and Himself is still somewhat immuno-compromised due to his cancer adventures. So far, though, so good. I've been lucky to get what we've most needed more often than not. Once I had to improvise with cereal, as the options were sparse; another time I've had to wait on getting rice because the rice we normally get was right out. Still, I've managed to keep everyone's belly full.

I have felt challenged with doing anything around the house, or looking at mail, or scheduling tasks...unless it has to do with writing. I have found myself writing consistently more often than not; in fact, I am almost done getting the novel I started with onto the computer. I've done some revising as I've gone along, with notes on further revisions once I review this particular draft. I also have the next few projects lined up to continue writing. Now if only I could channel this ambition into some of the other areas of my life! Perhaps it will come in time.

Most of the time, I feel rather decent. I do have spells of anxiety, but I find myself cycling through them instead of getting stuck within them. I remind myself now and again that I am emerging from a gnarly bout of depression that visited on and off for two and a half years, which followed Himself's cancer adventures, which followed a miscarriage, which followed a high-stress work situation! So there is absolutely no rush, nor reason to rush, getting into deep cleaning the house or aligning with the world as it is now. All things in the fullness of time.

So this is my snapshot of how life is behind the looking glass. I will update as things continue to unfold.

a frenemy called "desmoid"

Before I address the current state of affairs, I wanted to update everyone with Himself's test results...

Best news: it's NOT malignant cancer. It's benign. He is still technically In Remission! We both heaved huge sighs of relief at that news.

What it is: a Desmoid Tumor. It is associated with his specific genetic condition, which gave him a gazillion polyps in his GI system. They don't metastasize per se, but they can grow and become obnoxious if they come to block any key bodily processes.

At the moment, Himself only has the one desmoid in his mesentary, which means it can move/be moved about. We will see if the CBD oil has any effect upon it, now that we can afford to get CBD oil again in timely fashion. Everyone agreed just to keep an eye upon it for now, and do surgery to remove it only if it becomes obnoxious. This is because they tend to grow back; how likely they are to return depends upon who you ask.

Glad that we don't have to worry about that in our current situation. More about that to come in the next post. Stay tuned!

hello from bizarro-land

With visions of Coronavirus skewing the worldview, it seems appropriate to pop in with an update. I did not intend for February to slide completely down the rabbit hole, but it did, and now we have ended up behind the looking-glass. So without further ado, let me bring y'all up to speed...

Regarding Himself: the Mystery Spot turned out to be a lymph node gone rogue. It might, or might not, be related to the genetic condition that gave him a gazillion polyps in his GI tract. He had the biopsy last week, and we have an appointment at the VA this coming Monday to discuss results and next moves. Said appointment might be changed to a phone consult; we shall see.

In addition, his personal injury case (from the car accident in July 2018!) FINALLY settled. All accounting has been squared away, and we received enough to pay the property taxes (done), get new eyeglasses for Himself and Myself (next week), and to buy a new set of tires for the car (in about 2-3 months). Still waiting to see what happens in DC, but the squaring away of this has brought some profound relief.

Regarding the Queen Mother: she has continued to decline, then plateau, with her mental processes slipping a few more gears along the way. I am now documenting when she has her Episodes, and I find that she slips a little more each time. Since we found the cause - her incredible shrinking brain - I am finding that Patience is easier to come by.

Now for the bonus round...there is something called the Pickle Amendment (I kid you not, that's really what it's called) that has apparently opened the door for mom to be back on the Deluxe version of Medi-Cal! In true Mercury Retrograde/Bureaucratic fashion, I received the notifications from Social Security and Health & Human Services before I received the notice from the County office of this miracle. Earlier this week, she was re-evaluated for In-Home Suppportive Services, and I confirmed that I'm still an active Provider on her roster, so guess who is submitting a timesheet on Monday to be PAID to take care of mom! She is also getting more hours per month starting in April, and she is good to go for at least the rest of this year.

Regarding Moi: Besides all of the above good financial news which has really brought a considerable peace of mind, I have gotten back into Writing again, with my first love (Science-Fiction) and the first novel I ever wrote, which has undergone two or three major revisions and will doubtless undergo two or three more before I am satisfied. An unofficial inventory revealed two complete full-length novels, two in-progress full-length novels, a handful of intermediate-length works, a dozen short stories, and several notebooks/notepads full of ideas and snippets.

I was bound and determined to be an Author and Writer in the 90's. The closest I got to actual publication was receiving a personalized rejection letter. I jumped headlong into Metaphysics with the new millennium, but have usually had pen and paper handy to jot something down in the interim. Going back to my original manuscripts has "Sparked Joy" in my spirit, and I have a motivation to get me through the days that I didn't have previously, or even recently. With the advent of Self-Publication, I have the advantage today of not needing to submit to magazines or publishing houses before seeing my work in print out in the world. I won't however, put out garbage stories just so I can see my name in lights. This will be high-quality stuff, if Science-Fiction is your cup of tea. (If anyone is interested in seeing excerpts, holler back. I have come to appreciate the wisdom of a second set of eyes seeing what I might miss.)

So yes, I am alive and feeling better than I have for quite a while - just in time to combat apocalyptic cooties! I will definitely try to post here more often, and might even do a bit of vlogging as well, provided I can figure out the technical aspects. If not, there's always Instagram, though I'm going to be stepping back from that for a few days while people lose their minds. Huh boy...

mystery spot

Here's another one of those damn curveballs Life is infamous for throwing at us...

Himself's oncology follow up brought some unexpected news: there is a "mystery spot" next to his liver that was found on the latest CT scan. It's about an inch in diameter and wasn't present three months ago. It's not a coincidence that Himself hasn't been able to have his CBD oil consistently over these past three months, thanks to our ongoing financial challenges. From that persepective, it's not a total surprise that something would come up.

I guess it wasn't alarming enough in and of itself to call about, but I would have appreciated a heads-up about the spot, and I'm willing to bet Himself would have as well.

The immediate course of action is to have a PET scan, which is scheduled for tomorrow, to see how significantly said mystery spot is glowing. (The brighter the glow, the more likely it's cancerous.) Then there will be a discussion about those results this Thursday, followed most likely by a biopsy. Treatment options, if needed, will be discussed after that.

Hellfire and damnation.

Though Himself is understandably unsettled by the prospect of more cancer and more treatment, that's not my top concern. My concern is returning to the role of caring for two people at the same time, with very little, if any, available help.

The Queen Mother is not the same as she was in 2016. Her body has definitely picked up the pace to catch up with her mind. True, she's not nose-diving into the ground, but she has not been the same since her dual appointments at the start of this month. This past Friday she went to bed super early, claiming not to be hungry and declining dinner, which just about triggered a full blown panic attack in me. She turned out to be fine - even getting up at midnight to take out her dentures - and is back to complaining about silly things, but I am very much aware that she is going to need Supervision sooner rather than later. She's also continuing to drop words and finding it harder to keep track of conversations, so her mind continues to lead the way Homeward.

I am trying to take each day as it comes and not "future trip," as a good friend of mine put it. My first priority is to stay Sane. I will work on Positivity later. For the record, the cats are taking turns in snoozing on me/beside me. (Inkblot is snoring beside me as I type this.) I would have lost it long ago if it hadn't been for their presence in my life.

Will return later with an update, when I have it. Prayers appreciated in the meantime. 

parallel paths

Of course, after I post about how wonderful and optimistic everything was feeling, along came some other rising tides that were not so fun, although they turned out to be very insightful.

There was the anger that arose from deep within as I moved through some Pre-Menstrual Sensitivity. Once I had fully felt the anger, I realized it was arising from a big unmet need that I have been challenged by on this Odyssey: the need for Respite. Finding breathing space for myself is not easy with only one car to split between two drivers, along with a limited gas budget. I would love for Himself to stay home a bit more so I could "escape" for a few hours while he keeps an eye on the Queen Mother, but he has "Year End Obligations" as Treasurer of the Alano Club: reports to put together, donor thank you letters to send, information to get together for tax purposes. I try not to get resentful as he fulfills his obligations, but sometimes it's sorely tempting.

I feel like I am traveling on parallel paths: the path of the Burdened Caregiver, taking care of a mother who is sliding once again downhill (slowly, easily, but definitely downhill), and the path of the Home-Based Entrepreneur, who has found her voice  again and is re-establishing herself after a significant absence. As much as I would like to set up shop and perhaps even start making a little money for myself, without opportunities for Respite, doing anything with any sort of consistency will be impossible, as long as taking care of the Queen Mother is my top, and overwhelming, priority.

As long as I'm on this topic, there is also something a little disconcerting about feeling like I'm coming back to life at the same time the Queen Mother is getting nearer, however incrementally, to her passing. It almost feels like I'm doing her a disservice by not waiting till after she's gone before fully stepping back into my life. Ridiculous, of course, but that's how caregiving for a parent (especially) can warp one's thinking.  I am in another period of adjustment, seeing what I need to do to balance this equation once more, and I need to give myself credit for that.

Tomorrow I begin my Moontime once more, and will see if I can take the opportunity to chart a new course through these unknown waters I am sailing through in this Odyssey of mine.

turning tides

So I am sitting here, writing a new blog post and sipping some "Candy Cane Green Tea" from Trader Joes, a gift from a friend. There is a lot of Peppermint in this tea, as my mouth tingles a little after every sip! I am wanting an Evening Teatime as of late, to bookend the Tea and Morning Pages time that seems to help me anchor myself as I start my day. Perhaps it is my version of a digestif; if nothing else, it's definitely much lower in calories than anything I could munch on, and I've done enough of that already in this Odyssey, to my detriment!

Anyway, some better updates:
The Queen Mother seems to be improving incrementally. She is no longer spending half the day in bed, and is sounding more like her usual self. I say that she's not truly decent unless she has something to complain about, and she is picking up about where she left off, which was the day of her doctor's appointments. She is emailing her friends again, so this is also good.

Himself received an update from his personal injury attorney. One of the insurance agencies for one of the other drivers involved in the car accident in 2018 had agreed to what Himself's attorney had asked for, and had cut a check. Now there is the matter of persuading the other insurance agency to follow suit. Even if this agency agrees tomorrow and cuts the check, though, we're still not finished. There is the matter of asking our insurance agency if they would be willing to reduce their reimbursement request for the Med-Pay that Himself received to take care of his various post-accident complaints. Then we circle back once again to your friend and mine, the Veteran's Administration. Apparently they need to be asked if they would be willing to settle for less than their billed amount - which also happens to contain items that had nothing to do with the accident. We might be waiting until the next decade starts for a response, and I'm only half-joking.

Something interesting has been happening to me in the interim. I found a post on Instagram about something called the "30 Day Perfectionism Challenge," which is about breaking out of perfectionist tendencies. I embraced this challenge and have been doing it imperfectly in a big way. I've fallen behind and caught up. I've swapped days around as I've needed to. I have also made videos in response to some of these prompts. In so doing, parts of myself that I thought had been lost during this Odyssey have been found, and I feel like I'm getting back into my groove. I'm not sure what will happen once the challenge is over, but I will see if I can keep the momentum going.

May these tides continue to turn in my favor! :)

notes on the queen mother

Here we are, a bit more than a week into the new year/decade, and this is the first entry on this blog for 2020. I will be honest, I've been rather distracted by the Queen Mother for much of this time. She had a pair of doctors appointments on the 2nd, and has been on a downhill slope ever since. (Not a steep slope, but moving in a definite downhill direction nonetheless.) :(

What it looks like: she has been getting up later in the morning. She eats breakfast, but not as much as in the past, and then lies down again until sometime in the afternoon. Her dinner has also been shrinking, just a little. She will watch tv in the evening, then go to bed earlier than usual. She says something is "not right," but can't articulate exactly what is wrong. She is a bit more confused with her words, and has a little more trouble following along in a conversation.

Some of the problem was solved with her last Primary Care appointment; though we had received the letters with her test results, it was only when we were visiting with Dr. M. that we learned that mom's brain had shrunk, moreso than what can be accounted for with normal aging. He prescribed Aricept for her, but that might also be contributing to the severity of this "episode." (It has previously taken her a day or two to recover from going out and coming back home, but this has been going on for a week, with no sign of significant improvement.) As for the other appointment, she went to see the eye doctor, who declared she was now a "good candidate" for cataract surgery. We have the initial consultation scheduled for March.

On the one hand, I would like to take mom to urgent care to see if there's something underlying that might have been previously missed, that might be making its presence known now. On the other hand, getting her out of the house and returning home again is not only physically taxing, it also disrupts her routine, which is becoming ever more precious to her. So I'm not entirely sure how to proceed. Maybe find a doctor that can come to the house?

I have been pretty well staying home, reluctant to leave the house in case she needs help with something. Yesterday I helped her for the first time with taking a shower. The pain in her back and knees remains pretty well constant. I managed to get out for an hour today to pick up a few groceries, but what I really want to do is to get out and not have an errand or two to pursue, just have a wee respite. This, of course, would mean that Himself would have to stay at home for a few extra hours. Easier said than done, as he is up to his eyeballs in year-end financial reporting, since the Alano Club is a nonprofit organization. I remember a thing or two about that from my bookkeeping days, many moons ago.

So there you have it. Hopefully more to come later, Queen Mother permitting...