Same Song, Umpteenth Verse

We were going to try the allopurinol with Benadryl and prednisone, and my body said, “Nope. Not having it,” and threatened me with Stevens-Johnson syndrome if I didn’t stop this nonsense right this minute. I seem to tolerate the Venclexta — no nausea, vomiting or any of those shenanigans, but allopurinol is right out. And to be frank, I’m so glad the itching has stopped that I almost don’t care that I’m doing the skin peel thing all over my body again (except that my hands peel worst of all, which is severely annoying because I can’t knit!) I think I must be working on, like, my third set of skin this year.

I had a basic metabolic panel done yesterday and my BUN was the only value that was not within normal limits. It was high, but not all that high. I’m in limbo right now. Everything is stopped but the prednisone. I’d just as soon stop it too as I’m getting noticeably strung out on it. This morning, I felt nauseous after I took the two meds I have to take on an empty stomach, and I just rolled over and went back to sleep without taking any of the rest of my meds, including the prednisone. That was at 9:30. I woke up at nearly 5:00, having slept the day away. It felt good to sleep until I was done sleeping.

In the knitting news, I frogged that shawl I was working on because it wonked on me big time. It would have taken short rows to fix and I don’t have the band width right now to deal with short rows. But then I had this idea for a top-down crescent shawl with a twisted cable top border. You’re always seeing crescent shawls that start with a garter tab. If you want a fancy top border, you have to go back and knit it on. My idea was to use a Turkish cast-on instead of a garter tab, and knit the top border as you go. Turns out it works very nicely, thank you very much, even with a yarn over (yo) detail between the border and the garter stitch shawl body. There’s only a tiny wonky bit right at the center, but you have to hunt for it.

I’m about 5 inches into it and it keeps calling my name and I YEARN to be working on it, but I’ve tried knitting in these Laytex gloves and nope! And my bare hands are so snaggy because they’re peeling hand over fist. AARRGGHH!!

I’m reusing the same Caron Simply Soft (“Ocean”) acrylic yarn I was using for the frogged shawl. Caron Simply Soft tends to be splitty to begin with, and being knitted and frogged five or six times doesn’t help. (“Splitty” to a knitter means the strand of yarn has a tendency to untwist and separate into plies, which makes it harder for the point of the needle to catch the whole strand to make a stitch. That’s one of the downsides of acrylic yarn. Wool yarn, because it’s basically hair, has a “built-in” tendency to curl. A good spinner works the spinning and plying with the curl so that once a wool yarn is spun and plied, its natural tendency is to stay that way.)

Speaking of natural tendencies, I seem to have a natural tendency to dream during sleep. Even when I wake up without the aid of annoying noises (alarm clocks), I always seem to be waking up out of a dream. It’s like sleep is a sea of dreams, and I’m a whale. I sound down into the depths and stay down for hours. I come up for air briefly, and down I go again. Most of my dreams are fairly hum-drum and nondescript. I seem to spend an inordinate amount of time looking for my car in parking lots, or walking to some destination I’m not sure how to get to. My dreams have little emotional affect attached to them, apart from a vague, free-floating anxiety when I can’t find my car. (That’s what made the nightmares I had when I first started taking metoprolol so jarring and upsetting.)

I suspect that’s a function of my being where I am on the spectrum. Because of the unaddressed emotional disconnect my “light” autism created in my life from a very early age, I have become the cat that walks by herself and all places are alike to me. Being on my own has never bothered me.

(Our neighborhood feral cat.)

I’m basically a pretty stolid person, which I get from my dad, the Marine veteran of WWII in the Pacific. He was pretty much unrattleable. I did get a little “what-if” anxiety from my mom, but that plays out in an interesting way. (A “what if-er” is a type of anxiety where the busy brain is always asking — what if this terrible thing happens? what if that terrible thing happens? It’s pretty easy for them to spiral off into a state of paralyzing anxiety. I think my mom spent a good deal of her life anxiously waiting for the other shoe to drop and anxiously wondering which shoe it would be.)

Gemini that I am, now and again, I will catch myself having an interesting internal dialogue between the “dad” part of my brain and the “mom” part. For a recent example, I’m walking from the building 40 feet to where my car is parked and I’ll have this random intrusive thought — (mom) What if I slipped and fell and hurt myself? There’s nobody around. I could lie here on the pavement for hours . . . (dad) I would get out my cell phone and call Security, and they would come and help me. It doesn’t happen all that often, but it’s interesting when it does. It’s that “dad” part of my brain that makes me stop and think through a complicated task before I jump into the middle of it by saying things like, “No, always sweep/vacuum first and dust last; that gives the dust you stir up sweeping/vacuuming time to settle so you’ll catch it when you dust.” Last week, when I was having those severe side effects, it was that “dad” part of my brain that said, “Maybe you need to get up and go throw the deadbolt before you close your apartment door just in case, so the EMS people won’t have to wait for Security to come open your door if you can’t.”

As I say, right now I’m in a holding pattern waiting for a call from my oncologist as to what to do next.

Sumer is icumen in, lud sing grackle

Books Read in 2024

15.	When Falcons Fall, Harris, C. S. (re-read)
14.	Who Buries the Dead, Harris, C. S. (re-read)
13.	Why Kings Confess, Harris, C. S. (re-read)
12.	What Darkness Brings, Harris, C. S. (re-read)
11.	When Maidens Mourn, Harris, C. S. (re-read)
10.	Where Shadows Dance, Harris, C. S. (re-read)
9.	What Remains of Heaven, Harris, C. S. (re-read)
8.	Where Serpents Sleep, Harris, C. S. (re-read)
7.	Why Mermaids Sing, Harris, C. S. (re-read)
6.	When Gods Die, Harris, C. S. (re-read)
5.	What Angels Fear, Harris, C. S. (re-read)
4.	Shogun:  A Novel of Japan, Clavell, James (re-read 1210 pages!!)
3.	*Demon Daughter, Bujold, Lois M. 
2.	Lord Peter, Sayers, Dorothy L.  
1.	The Nine Tailors, Sayers, Dorothy L. 

* Ebook  (re-x-read) reread more than twice

On The Edge

For those who are interested, a further word about the (sl1 wyif, k1) edging. (If anybody knows what this stitch is called, please let me know!) If you are adding it to an existing pattern, you will need to cast on four more stitches than the pattern calls for, as the edging is worked over the first two and last two stitches of each row row. Here is an example of the edging on garter stitch: Front of work, edge, and back of work.

Abbreviations: 
Sl1 - slip one stitch purlwise from the left to the right needle without working it. 
wyif - with yarn in front of the work as if to purl.

At the beginning of the row, keep the working yarn on the purl side (front) of the work, slip the first stitch purlwise, then move the working yarn to the knit side (back of the work) and knit the next stitch. Proceed with the row as written in the pattern until two stitches remain.

With two stitches remaining, move the working yarn to the front of the work, slip one stitch purlwise, move the yarn to the back of the work, and knit the last stitch. (You are, in essence, wrapping the working yarn around the front of the slipped stitch.)

I suspect this stitch might be a narrow version of an I-cord edging. That’s the edging I used on both edges of this shawl.

Books Read in 2024

1.  The Nine Tailors, Sayers, Dorothy L. 
2.  Lord Peter, Sayers, Dorothy L. (collected short stories)
3.  *Demon Daughter, Bujold, Lois M. 
4.  Shogun:  A Novel of Japan, Clavell, James (re-read 1210 pages!!)
5.  What Angels Fear, Harris, C. S. (re-read)
6.  When Gods Die, Harris, C. S. (re-read)
7.  Why Mermaids Sing, Harris, C. S. (re-read)
8.  Where Serpents Sleep, Harris, C. S. (re-read)
9.  What Remains of Heaven, Harris, C. S. (re-read)
10. Where Shadows Dance, Harris, C. S. (re-read)
11. When Maidens Mourn, Harris, C. S. (re-read)
12. What Darkness Brings, Harris, C. S. (re-read)
 
* Ebook  (re-x-read) reread more than twice

Cheap at the Price

My apartment’s internet has been up and down and up and down and up and down for months, and then it went down and stayed down, and my phone’s hotspot was the only way I could connect to the internet. In one month, I used over 35 GB of “unlimited” phone data, and Consumer Cellular turned my data off.

(At Left is the New Kid on the Block)

I called them up and remonstrated with them, got moved from the “legacy” plan to an actual unlimited data plan (that will be more $$ a month, thank you very much) and I limped on. (Even if my apartment WiFi worked, I would still need my hotspot when I’m in chemo to connect to SomaFM’s Drone Zone music channel that has been my salvation through the thick and thin of chemo treatments.)

The basic problem with our WiFi here is that the building was built in the 1970’s and so was the wiring. To rewire the whole site for fiberoptic service (the gold standard) would cost a bazillion bucks. Our poor campus IT guy is, if you’ll pardon the expression, busier than a one-legged man in a butt kicking contest trying to keep things up and running. He managed to zoom by and was going to order a piece of equipment for me (and forgot to) and two weeks went by, and we caught him in passing again. He profusely apologized for forgetting to order the thing I needed. I got him to show me what to order on Amazon and I ordered it on the spot. A little $20 router, cheap at the price if it resurrects my WiFi. Two-day shipping, got here this morning. He installed it this afternoon and got me up and running again. Halleluia!

#4 Orchid is blooming. It’s magenta stripey, and smaller than the plain magenta ones. It’s blooms are about the size of the Rescue Orchid. The blooms have the same stripe pattern, except where this one is magenta, the Rescue is yellow. All five orchids are in bloom now, and I’m a happy camper.

The chemo regimen I’m on now is Gazyva (obinutuzumab) and Venclexta (venetoclax). I started with the Gazyva IV infusion and had it three Mondays in a row. I get to skip this Monday and start the Venclexta tablets, which I take daily. I get another Gazyva infusion Monday week, and then I will get them once a month for six months. I will take the Venclexta daily for a year. Fingers crossed this does the trick. I had 50-60% bone marrow involvement as of the bone marrow biopsy I had in March. Remission is possible.

My knitting mojo emerged from hiding last week. I did a WIP review and frogged a couple of things, but was not really motivated to work on any of the others. Naturally, I started something new. Pretty straightforward asymmetrical triangular shawl with a twisted cable border. I’ve got six skeins of this Caron Simply Soft in the colorway “Ocean.”

It has three of these evenly spaced twisted cable panels, or will have when I figure out how I want to do them. I think I want to just cast on the 21 stitches necessary to work a panel at the appropriate point. It also has that S1 wyif, k1 border that looks so nice. (I-cord border?) I’m writing down what I’m doing but basically I’m just winging it. If it ends up too wonky looking, I’ll just frog it. It’s acrylic yarn.

The latest Sebastian St. Cyr book dropped on the 16th. It is now in my hot little hands. I’m on the 8th book of a total series reread, and will read my way up onto it. The books are stand alone, but they’re written in chronological order. The Humpty Dumpty method is recommended: “Begin at the beginning, go on to the end, then stop.”

I Think I Have It Sussed

It’s going to be a jugging act, though. The hospital system my cancer center belongs to has a “patient portal” where I can access things like lab tests, appointment schedules, etc., on line. Mine are mostly white blood cell differentials (how many of each kind of white blood cells), complete blood counts (how many red blood cells, white blood cells, platelets, etc,), and basic metabolic panels (the amounts of a select group of substances i.e., sodium, potassium, uric acid, BUN, creatinine, etc., are present in the blood). Which means I can look at these test results on the computer whenever I want. I get these lab tests before I do the second day of chemo, so I can track that data over time.

What’s been causing my weakness is low blood pressure due to dehydration. I get IV fluids with the chemo to help my body flush it through my system. I empty out my legs for an hour or two every night, but then my sodium (table salt, one of those “electrolytes” that are all the rage these days) drops, and my output gets ahead of my input. What’s been causing my hand and foot cramps is not low magnesium or low calcium, but hyponatremia — low blood sodium (“Na” for the STEM crowd).

My sodium dips below a certain point and the “thirst” circuit in my brain gets switched off to protect what little I have left. My blood pressure falls (90/51 mmHg, for example, which is almost “fainting low”) because I don’t have enough water to go around. I need to drink, but I’m not thirsty. My kidneys need to keep the chemo chemicals and waste products flushed out of my blood, but I’m not thirsty. It’s a vicious cycle. My blood sodium levels are the key. If I can keep my blood sodium levels within normal limits, my thirst circuits will do what they’re supposed to do and we can keep the system flushed out.

Cardiologists put you on a low-salt or no-added-salt diet because eating a lot of salty foods causes you to retain fluids and raises your blood pressure, which makes your heart have to work harder, not just from the extra volume of fluids it’s having to push through the system, but because of the weight those fluids add to your body. The World Health Organization (WHO), the Centers for Disease Control and Prevention (CDC), and American Heart Association (AHA) all recommend keeping sodium under 2,300 milligrams (mg) per day. The Institute of Medicine (IOM) suggests aiming for about 1,500 mg per day. Because my cardiologist has me on a low salt diet, I keep an eye on how much sodium is in a particular food. (Don’t just look at the amount of sodium per serving, look at the serving size, too!) There are foods I’ve stopped eating because they are so high in sodium. Soft drinks, for one, particularly the “diet” soft drinks. Potato chips and corn chips for others. Wolf Brand Chili. (1000 mg per 8 0z serving, almost half the American Heart Association’s minimum daily requirement!)

It was blustery and rainy and down-right COLD today. I got up at still dark o’clock and hunted down my rain coat. The wind kept batting me around and trying to take my umbrella away from me, and I thought I was going to have to tack to get into the cancer center. (To tell you how much the salty food has helped, yesterday I slept through most of the 6-hour infusion and my blood pressure was 110/51 mmHg. Today, my blood pressure was 125/60 mmHg and I read for the 3 hours I was there.)

On the way home, I stopped by Market Street to get cheese, scallions and some other stuff, as well as a little pop up bouquet for my lawyer because she’s such a champ.

I was going to hold out for a blue orchid and then quit acquiring them (you can quit laughing any time . . . ), but today I rescued this little guy. He was the last of this color scheme and had obviously been bullied. His flower spike was almost completely broken in two and the top part was just hanging by a thread.

I had already decided to quit after I got one of the blue orchids owing to window room, and had already ordered the water container and orchid pot for it (arriving Thursday) but I will wait till he’s done blooming to repot him. Once I get the arrowhead plant rooted and potted, I’m going to “free to good home” it so that will open some window-front property.

Today my lawyer and her two witnesses came over at 1 o’clock. We signed papers till the world looked level and notarized about half of them before the witnesses. (My lawyer put herself through law school by working as a legal assistant for the law firm my mother worked for, which is how I knew her. When she was a legal assistant, the firm got her commissioned as a notary public, and she has maintained that status.) This is part of the ongoing saga of me getting my legal and financial ducks in a row. (Will, Powers of Attorney, Advanced Directives, etc.)

This afternoon, I tuned in to the “Suburbs of Goa” channel of SomaFM and got lucky. They were playing a block of “Middle Eastern” music. Then I unearthed my pasta pot, boiled up a box of small elbow macaroni, got 2 cans of Wolf Brand Chili (with beans), dumped them in my blue casserole dish, added a small can of sliced black olives, four chopped scallions (green onions), a heaping handful of Sargento’s 4 Cheeses Mexican blend, and about a cup of little elbows. (This was the first time I have used a stove since I moved to Carillon!) That makes about 6 servings. I had one for a late lunch. I had 16 oz of Dr. Pepper and a single-serving bag of Chex Mix yesterday, and my thirst circuits were firing on all cylinders today.

My Christmas cactus, bless it’s little green heart, sneakily put out this single bud, as though expressing solidarity with the local representative of Mother Nature. (G. Who) I need to go exhale on it a couple of five times and give it some CO2 love.

The small entryway rug arrived and has been put in place. It is in the same pattern as my big rug and in exactly the size I needed. The apartment last had thick pile carpet and the bottom of the door was cut to make allowances for that. But, because Carillon is also an assisted living and skilled nursing facility, health care regs require that when one occupant moves out, they have to trash the carpet. I chose luxury vinyl plank flooring but the rugs help define areas.

I think I’ve finally got my apartment the way I want it.

Oh, and our environmental tip of the day is to save and collect the little snibbies of yarn you snip off when you work in ends. In the spring, when birds are building/renovating their nests, they love these little bits of yarn to use to line the inside of the nest. You can rub the yarn snibbies over the rough bark of a nearby tree and snag them where they can easily find them. How snuggly for a baby chick!

So Far, So Good

Well, the first week of my new chemo regimen is behind me. I can tell already that the challenge is going to be to keep my blood pressure up into the normal range, which has to do with staying hydrated, so I can maintain adequate hydraulic pressure.

I called in a pizza strike this afternoon because, durnit, I deserved a treat. The website practically insists that you tip. Since I don’t know how tips are distributed (probably added into a pot and then split evenly among the drivers), I always tip way low. Then I slipped the nice young man who actually delivered the goods a Hamilton and a couple of Washingtons “off the books” as it were. He was honest enough to point out that the receipt showed I had already tipped, but then, as I pointed out, management didn’t see me slip him the dough.

On my floor, we have a nicely furnished common area with arm chairs, sofas and several card table sets. The laundry room is right across from this area and there are three hallways radiating off from it like half an asterisk (*). My apartment is at the beginning of the northeastern-most hall, conveniently near the trash chute and the people elevator at one end, and the freight elevator that leads to covered parking (and the Greyola) at the other end, so I only share a wall on the kitchen end of my apartment. Next door is a 2 BR, with her kitchen on the wall she shares with me. She has a washer and dryer hookup with one of those ecologically friendly, stackable, apartment W&D’s. When I’m sitting at my computer, I can hear the washer washing and spinning, only not intrusively so. The sound of it spinning is predictable, but the sound of it washing is this kind of dun-dunt, with about a 3-beat pause between each pair of dunts. The first time I heard it, my auditory memory coughed this up. Either it’s a hilarious coincidence, because it’s exactly in rhythm with Page’s DUN-DUNT power chord intro, during which Bonzo displays some of his exquisite high-hat skills or else the Peace and Love generation has snuck one in on the appliance industry. It is one of those little graces the world sometimes slips you that deftly disarms the annoyance of a noise and leaves you with a chuckle. Ain’t complaining. One of my all-time favorite songs from one of my all-time favorite albums.

I have discovered a localized anomalous phenomenon that has to do with my Logitech gamer keyboard. It has five little rubber bars glued to the underside to keep it from scooting around on the desktop during hot gaming action. Or it did have until late last year, when I happened to look down and see that the little bar in the lower left corner was askew. When I lifted the keyboard up to see what was going on, I discovered that the little rubber bar that was supposed to be there was still there, firmly affixed in place, but a second little rubber bar had mysteriously appeared on top of it and was just misaligned enough to make it noticeable past the edge of the keyboard. I relocated it to the center of the keyboard and forgot about it. Fast forward to about ten minutes ago, I looked down and saw the edge of a little rubber bar was again protruding from the lower left corner of my keyboard. Upon investigation, I now have seven little rubber bars with no idea of the provenance of two of them. I just hope that somewhere in the multiverse, it is not I who is saying unlady-like things because another of her little rubber bars has vanished mysteriously from the back of her keyboard . . . (little rubber baby bumpers . . . .)

The weather has been blustery for the past two days, as in 30-mph winds gusting to 50. Owing to the time of year, we have been having our annual vernal soil rearrangement and heavy equipment maneuvers outside the immediate city limits. The wind has kicked a lot of this up into the air and I have been besieged by when-you-least-expect-it ninja sneeze attacks. I have the sort of trigger mechanism that can be cocked and uncocked, but once you pull the trigger, BANG! is how it goes. It’s the kind of sneeze that makes you want to sue for damages to the tune of at least 6 figures.

We have been in the oatmeal season for a week now, courtesy of a local representative of the Siberian Elm (Ulmus pumila). These are its seeds, which are ubiquitous this time of year. Yeah, it’s a tree, but it’s an invasive species, a squatter that has moved in from Asia and taken over the neighborhood. In addition to the damage it does to our local ecosystem by its mere presence, it’s not even a very good tree.

The trunks are prone to splitting and the limbs are prone to breakage, not good traits in such a windy part of the world. Moreover, they are short lived, living only about 50-60 years here in the flatlands.

I think this (at right) is a red pine (Pinus resinosa), a male tree with multiple strobili. If my ident is correct, I don’t know what this species of pine that is native to the forests of Michigan, Wisconsin, and the Great Lakes is doing in a place with such hot summers as we have here, but that is the best photo match I’ve found to this.

There’s two of them in my little corner of the campus, both male and both covered in strobili.

This fellow is the great tailed grackle, (Quiscalus mexicanus). They are “yard birds” here — to be seen with their little harems of bronze-feathered females policing the grass for edibles. At the moment, since it is spring, the males are the John Travoltas of our local disco scene strutting their stuff for the delectation of the ladies.

Their distinctive calls are everywhere. Ditto the mourning doves (Zenaida macroura). The males are up at ridiculous o’clock of a morning staking out their territories and warning other males off their patch with their characteristic boo-HOO-hoo-hoo-hoo-ing all the livelong day. Throw in a soap opera of squabbling sparrows (Passer domesticus) and that’s been the soundtrack of my early mornings lately.

Tomorrow is another day of chemo which starts at 7:20 E-flat o’clock in the a.m. Then Tuesday, the lawyer, her law clerk, one of my bank’s trust officer, and the lady who has agreed to be my power of attorney for healthcare (until she retires and moves to central Texas at some point in the indefinite but not too distant future) are coming by to sign a bunch of legal papers. I’ll prolly miss the eclipse-watching party Carillon is having at the same time. Sigh.

Mom had gone to this one accountant firm for a coon’s age, so I took her papers over so they could prepare her final tax return. I also sweet-talked him into doing mine for the first time since the 1980’s. I figured it would not be a bad idea for me to build a relationship with him (not to mention continue to give him business), especially as I was unclear how mom’s passing was going to affect me pecuniarily. Besides, I was not about to try to deal with the Taxman myself, especially with a case of incipient chemo brain. That’s my task for Wednesday, to get a bank check cut for the taxes she owes and sign the returns. I count myself lucky if I come out owing no taxes, but this year, I actually got a refund (which will almost be enough to pay the lawyer).

Here We Go Again

I have definitely turned the corner. Wednesday, after I drove myself to the VA for my appointment (and got labs drawn — there is some question about my thyroid function), I went to this friendly neighborhood nail salon that’s in a strip mall at 19th and Quaker, right handy. My hands were still peeling, but just peeling, not peeling raw anymore. It seems most of the good nail salons in town are run by Vietnamese-Americans, including this one, but it’s nice and the people are nice and it’s named The Orchid Nail Salon. The nice lady who massaged my hands and feet got a little happy with the callus scraper on my feet, so I just blew off going to Walmart and went home. Sufficient unto the day.

Thursday, I took it easy and lay in bed all day. Carillon, in it’s inscrutable grounds maintenance, has been doing something that requires drilling through concrete, and they are doing it right outside my window in that little patio area. They drill for a while, then they have to have a discussion about it for a while . . . They start bright and early at 8:00. Since I can’t hear myself think, never mind sleep, I’ve been having breakfast, which I usually never do. I appear to be on a scrambled eggs and bacon kick. Some nice protein never goes amiss, though.

For weeks, I had been contemplating a slight rearrangement of furniture involving the scooting down of a rug, which was part of the reason the dinette set had to go. It was taking up too much space for only being used as a place to collect flotsam and jetsam. The desk works much better in the space. Friday, I reached critical mess and went after it. I have a little tank vacuum with brushes and crevasse tool, etc., but apparently the floor wands didn’t make the move. Never mind. All the furniture came off the rug, everything got scooted back, the rug got repositioned, and then I vacuumed skin flakes off the rug, off the floor, off the chairs . . . and everything went back.

I had gotten some organizer bins for this collection of little seasonal signs that I hang on my door. (That’s a thing here. We are very liturgical.) I got those sorted, and put my woolen shawls in a sweater keeper with cedar. I replaced a plug strip with a better one that makes life easier. And I vacuumed up skin flakes off the floor until the world looked level. (Insert joke here about cleaning up before the maid comes on Monday. )

Today was Walmart run day. It was busy but not heaving. I desperately needed to go as I was out or nearly out of many things. I went home by way of Whataburger, absconding with a chicken strips meal. I had been noted to have hyponatremia in the hospital, and I figured I could get away with all the salt. I have this wonderful little folding cart that goes in the trunk/boot of my car. Money well spent. I unload my trunk into it and roll it into the freight elevator (!) at the end of the hall, and it’s a straight shot to my door.

I still have two cases of Ensure High Protein in the back seat of the car that I need to go down and get. (I’ve been taking my meds with a bottle of same, morning and evening, trying to load on all the nutrition I can.)

I’ve gotten my printer moved and I have a sack set out to purge files. I need to check with various people about how much of mom’s stuff I need to keep for how long and purge everything else, as well as purge some of my own files. My poor little filing cabinet is rather stuffed at the moment.

Tonight (if I have the energy) and tomorrow I need to do at least two loads of wash, and probably three. I have new sheets that have to be washed before they can be put on the bed, plus a load of clothes, and then the sheets and towels that I replaced with clean need to be washed and put away. (I have two sets: One clean and one on.)

Monday, I start chemo again. I’ve gotten a ride with the Joe Arrington Cancer Center shuttle bus and have to be down in the lobby at 7:30 in the morning (!). I’m getting a ride this time because I’ve never had this regimen before and I don’t know how I’ll feel when I’m done. My messenger bag is packed with the stuff I’ll need — tunes, a book, antinausea medication, snacks. The main infusion takes 6 hours. Not my first rodeo. Cowgirl up.

Oh, What Fun

Sunday night week ago (the 10th), I was so weak that while I’m putting ice, drink mix and water in my drink bottle, I have to stop and rest four times. Fortunately, its only about four o’clock in the afternoon and I can call down to the front desk and have a nurse from assisted living come up. He calls the ambulance and off I go. We will gloss over the episode of projectile vomiting I had shortly after getting to a room at about 1 a.m. and go straight to the hospitalist deciding there’s this one medication I don’t need to be taking and decided it would be perfectly fine to cold turkey me off a medication that must be tapered over 2 weeks to be discontinued because stopping it abruptly can cause serious neurological consequences. I had to threaten to go home against medical advice before they’d give it to me, and I was already suffering some withdrawal symptoms (ants in the brain!).

In the meantime, they’ve decided I must have some kind of infection and have started me on vancomycin. I have a really messed up metabolism and I’m very allergic to molds; most antibiotics are mold-derived, including vancomycin, and they’re giving it to me too fast besides. It’s called Red Man Syndrome for a reason. I’m beet red with a splotchy rash, and they’re having a committee meeting trying to figure out what’s going on and is this actually Red Man.

My hands are peeling raw, my face is peeling. Do they stop all antibiotics? No. They change to a different one which causes intense itching all over my body for over an hour until they finally decide to give me some IV Benadryl and Atarax, which does take the edge off.

My histamine response is already in a tizzy and I proceed to have a full blown asthma attack, the like of which I’ve never had, even when I was living in the house with black mold in the attic in 2014. (and hadn’t needed any asthma medication at all since moving out of it.) We’re talking breathing treatment with nebulized albuterol because of severe bronchospasm asthma attack. That’s when they decide maybe they’d better stop the antibiotics — like the three sets of negative cultures doesn’t clue them . . .

And all the time I’m there, they’re pumping me full of IV fluids faster than my poor little kidneys can throw it off — to the tune of gaining 24 pounds of nothing but fluid in a week. So I already am having trouble breathing because my spleen and liver are enlarged and there’s no room for my lungs to expand downward. Now I’m in fluid overload and gasping for breath at the slightest exertion. Lasix! We finally managed to get enough fluid off me so that I could go home Sunday evening.

And they’ve got me scheduled for doctor’s appointments immediately Monday morning. No way I can drive myself. Carillon can drive me but they need 24 hours notice . . . I was able to get them rescheduled.

Oh, and did I mention they issued new key cards while I was in hospital and I had to call security to let me back in my apartment. Security had to resort to the actual metal mechanical emergency pass key to get my apartment door open because her key cards wouldn’t work either — nor do my new ones. Tuesday maintenance had to change out my whole door lock to a newer kind. And fix my broke doorbell. And the internet is down. Again.

I could have coped just fine if they hadn’t messed up my hands. That just adds two orders of magnitude of difficulty to everything. The skin on my hands is peeling like a snake and in places is cracked down to bleeding. Thank goodness I happened to have a box of latex gloves I got when mom’s floor had COVID, or going to the bathroom would have been extremely problematic . . .

During my January to October stint of chemo in 2022, whenever this one nurse would access my port, she would give me the packet of gloves that come in this little kit you use with the stuff you need to do that, and I had about 6-7 packets of those gloves, which are latex free. When my new oncologist saw me Wednesday, he prescribed some Silvadene cream for my hands, and then I put these gloves on. Thank goodness that’s helping.

My whole body is flaking like a really bad sunburn. My face is peeling. My lips and nose openings are peeling. Imagine painting your face with a thick coat of white glue and having it dry. It pulls my eyelids in odd directions and makes seeing out of my glasses problematic.

I’ve finally managed to throw off all but about 5 pounds of fluid now, and my lower legs no longer look like the Michelin Man. I seem to have found my ankles again. My strength is coming back. My hands are noticeably improved. I’ve turned the corner. They have me on 20 mg of prednisone a day to chill out my histamines and help with my enlarged spleen, and I’m not nearly so wired as I get with larger doses.

The white orchid started to bloom while I was in the hospital. That’s three for four. The flower spike on #4 orchid continues to grow. The arrowhead plant has embarked on a campaign of world domination. The Christmas cactus has been budding and asserting its dominance. The tumult and the shouting has died. The captains and the kings have departed. Elvis has left the building. Slowly but surely, things are settling back down into what passes for normalcy these days.

Saw something the other day about human insulin cells especially modified to release insulin when exposed to sound. They tried various types of music — orchestral, classical, Broadway show tunes — to stimulate insulin production. Guess what music worked best. Queen. We Will Rock You. I’ve been giggling about it for days . . .

Well, That Explains It . . .

When I had my first bone marrow biopsy in 2017, they did it on both sides, instead of just one. Now I know why. They tried the left side first and didn’t get any. Same thing happened yesterday. She tried and tried and couldn’t hit marrow. So then we had to try the right side, and did manage to get some. As a consequence, I have two big square Band-Aids across the lower part of the small of my back. The first time I had a bone marrow biopsy, they were also removing a lymph node from my left armpit and knocked me out to do it, otherwise I would have known to tell the lady not to bother with the left side. I think if I have to have another bone marrow biopsy, a radiologist had better do it under fluoroscopy.

The desk is still in a box on the floor (at left), but I got the TV table put together Thursday night. It’s not bad for what it cost, and actually looks quite nice. It was simple to assemble — four screws to hold the legs on, four screws to attach the bottom shelf, and Bob’s your uncle.

Of course, you use an Allen wrench, key, thingie, whatever you call them (included), to tighten the screws. Did I mention I HATE ALLEN THINGIES, I HATE THEM! (Inarticulate utterances of rage!)

I may go ahead and put the desk together tomorrow and maneuver it out of the way behind the dinette set. Or I may just put the box out of the way somewhere and wait until the dinette set is gone. The side board is on casters. I can flip the rug back and move the side board forward, then slide the new table in behind it and move everything over to it except the TV. I’ll need help moving the TV, not because its heavy but because it’s big (55 inch diagonal).

One of the other reasons I’m ditching the sideboard is because when they moved me into my apartment, they racked the sideboard and pulled the legs loose on the bottom. I’ve never trusted it since. The TV table is good and sturdy. I need to put those felt dots on the bottom of its legs so it will slide without marring the floor. I think I’ve still got some tucked away somewhere

This coming week, I’ve got the people coming to get the furniture on Monday and a chiropractic appointment on Tuesday. Apart from that, the deck is clear. Chemo starts bright and early Monday week. I suspect I’ll have to be going by the VA at some point and picking up medication. But in the meantime, I think I’ll go get my book and snuggle in for a good read. Yeah. That’s what I’ll do.