Monthly Archives: July 2015

Sitz baths and tea-bags.

6/16/2014

dormouse-wonderland_BW_optWell, that was unexpected and unpleasant. The Insomnia Fairy visited last night, but despite that I rose in good form this morning and drove myself to radiation, and had that, and visited with the doc, and started home and felt suddenly blind-sided by weariness. I thought it might be the absence of breakfast, and actually felt like eating same, so stopped off at the Coffee Shack and had their french toast on homemade luau bread (soft, with bits of mac nut in it), but was only able to down a quarter of a piece. Drove home clinging to the steering wheel. Weary beyond description, and also queasy (I took one of my anti-nausea pills). I had hoped that the passing of most of the chemo from my body would take with it some of the more unwelcome side-effects, but apparently not.

For relief of my nether regions, Dr. Gemer suggested a warm sitz bath with a teabag in it. Alice in Wonderland, anybody?

The non-GMO cat.

6/15/2014

Unsettling event just before dusk yesterday. My neighbor downslope (makai) lives in a shack and has decorated the entrance to his driveway with signs that say KEEP OUT and KAPU and NO TRESPASSING and VIDEO SURVEILLANCE and other indications of a bright and well-balanced mind. A few months ago he and some cohorts brought in a humongous amount of soil, dumped it, and have been growing vegetables. He is, so far, a nice guy: we wave at each other and all is copacetic. Recently he seems to come by only every other day to tend the garden, and the rest of the time the place is locked up tight. Between his place and mine is an unimproved lot, lava, and a few scrawny ohi’a trees, so we have a clear view of each other.

Further background: Jack, my beloved tuxedo cat, has become an escape artist and flees the house when given a chance (if that chance comes when he is not napping). I thought he spent his out time wandering around the property, rolling in the red cinder, or exploring under the house, but apparently this is not the case because yesterday the neighbor came by to say that the black and white kitty was digging up and messing in his garden, and could I please make him stop because he’s trying to go organic and non-GMO. I assured him that I would, but after he left I got to thinking. If he’s not there during the day, how does he know it’s my cat and not another one? And even if he does recognize the cat (and I have no argument with that, per se), how does he know that it’s my cat? If he’s not there much of the time, how does he know where the cat comes from and goes to? Aside from the fact that having something dig up your vegetable garden sucks, how does being non-GMO fit into this? Does he believe my cat is an agent of Monsanto?

Which leads to this upsetting thought: if he does indeed have surveillance cameras, does he have any of them trained at my house? And this even nastier thought: is this all just chemo-brain talking? Burny said that when he was on chemo, he had a moment at the post office when he was convinced that the guy in line behind him was planning to kill him.

I lay awake for much of the night watching this carousel of curiosity and paranoia before coming to a partial solution and drifting off to sleep.

I already have the beginnings of a screen growing between our properties, but it is taking its own sweet time. Once the bedroom floor is finished and peace is achieved in the house, I will ask Steve to dig a planting ditch along that side of the property, we’ll fill it with planting mix, and I’ll put in fast growing vegetables: pole beans, climbing tomatoes, peas, etc. I saw a nifty idea on line: a gardener drilled holes in the bottoms of old gutters and mounted them on tall braces and filled them with strawberry plants. If I did that here it would be like maintaining a buffet for the birds, but I could cover it with netting and that, too, would help obscure the sight lines between the two properties. Maybe some cherry tomatoes would like to hang out there, too.

And, regardless, I’ll foil Jack’s escape efforts, for fear he’d end up an ex-kitty. Which would break my heart.

Side-effects, again.

6/14/2014

First solid night’s sleep since May 1, courtesy of 5mg Ambien and half a Vicodin. Am down to three side-effects: exhaustion (despite the solid sleep), sore tongue, and, oh yeah, what’s called “chemo brain” which is basically the inability to pass a Turing test without help. The zen of cats has opened to me and I am now at one with the essence of lassitude, staring blankly into the air and vaguely hoping that someone shows up soon to take care of whatever-the-hell-that-is. Apparently I am too stupid to read even awful historical novels: a small part of the brain says “there is absolutely no antecedent for this scene” while another part says “Eadwine, who the hell was … oh yeah, last paragraph.”

Still no appetite, which may be a blessing since I can’t seem to put anything in my mouth (except light liquids) that doesn’t hurt. Peg and Burny have loaded me up with a drink called Alō, where the lumpy parts are goopy aloe bits. It works. And of course there’s gak gak gak gak. I almost got through two soft scrambled eggs this morning although I was defeated by the fettucini Alfredo last night. I am currently faunching for fresh watermelon. I wonder where I could find some? And whether it wouldn’t sting, being a fruit and all.

My support team.

6/13/2014

Most of the chemo side-effects are draining away, except for the exhaustion and my mouth being paved with sores. That’s okay, I’m not currently using it to eat anyway (except for gak gak gak gak) or to talk much. Did manage a soft scrambled egg the other evening.

Burny came by and replaced the circuit breakers for the dryer, which is working again now. The man is a saint. Yesterday he drove me to chemo and then to Costco, where we bought the flooring for the bedroom, which Steve and Nancy are currently installing. I love this stuff. It’s a laminate, and the panels just click together, no glue, no fuss, no muss. I expect to be sleeping in my own bed in three days, just in the nick of time.

No word from my supervising attorney.

Last Monday, Michelle snapped a photo of me and my home support team, as I lay crashed out after radiation. I am being well taken care of.

Support Team 2

I’m a perambulating HazMat site! Oh boy oh boy.

6/9/2014

Every day in every way I’m getting better and better. Every day in every way I’m getting better and better. Every day in every way I’m getting better and better. Every day in every way I’m getting … oh, the hell with it.

Okay, first of all, the Monday x-ray is simply to make sure I am situated correctly in the Cyclops and to make any adjustments needed to the radiation beams. Perhaps the tumor has shrunk a little, perhaps not. Dr. Wilcox won’t admit to anything. Perhaps the next chemo cycle will be easier, perhaps not. What he is sure about is a diet of Ensure (gak gak gak gak gak), and maybe, okay, I got some blisters in the Antarctic region. But I do feel better today than I felt yesterday, for which thank god. There is a Mexican saying that translates as “there is no ill that lasts a hundred years, because there is no body that can withstand it.” That constitutes yer cheerful thought for today.

Wilcox, who is a jolly sort, also allowed as how the plan is to kill me and then bring me back, so if I don’t make it through, you know who to send the sheriff after. And just to make the point crystal clear, when they delivered the first chemo dose a week ago, they sent me home with a commodious shoe-box labeled Chemotherapy Spill Kit, emergency response pack.” The directions on the back read:

Contents: 2 pr ChemoPlus gloves (Malaysia): 1 ChemoPlus Gown (China): 1 pr safety glasses, 1 respirator mask, 3 spill towels, 2 Chemo Waste Bags, 1 pr shoe coverings, 1 sign, 2 ChemoSorb pads, 1 scoop with detachable scraper, 1 tie wrap (USA).

This, essentially, is a HazMat suit.

KEEP EVERYONE AWAY FROM SPILL SITE.

1. Take out all contents of this kit. Display sign near spill area.

I was curious to know what the sign says, but it’s neatly packaged up with the rest of the stuff so I let it be. I suspect it says “Chemical Waste Dump! Run for your lives!”

2. Put on ChemoPlus Gown, shoe coverings, respirator mask, safety glasses and both pairs of gloves (large gloves first). Important: Read enclosed instruction for respirator mask to ensure proper fit.

3. Lay ChemoSorb Pads over the spill. The pads will absorb the liquid and transform it into a gel to assist in disposal. Caution: ChemoSorb gel us extremely slippery when wet. Avoid skin and eye and do not inhale.

Presumably steps 3 and 4 are to be managed while turning blue.

4. Detach scoop from scraper and use both to pick up the ChemSorb gel. Place contaminated gel in one of the waste bags. If there is any broken glass, use scoop to place it in a Sharps Container.

& etc.

And if you are allergic to natural rubber latex, you are fucked.

This is the stuff they are putting inside of me. Kevin Wilcox, M.D. Pleasant sort, early 40s maybe, a little tubby. Mondays at Kona Community Hospital. Dr. Keona Beale and, currently, Dr. Dipak Ghelani, M.D., Kaiser Kona. Remember those names.

Also, I ‘fessed up to my supervising attorney today about the cancer and the chemo, and put the entire employment question in his hands. Nothing like living on the edge.

Quick trip on the Way-Back Machine

I think I forgot to tell y’all about my new dog. I adopted her in November of 2013.

Her name is Abby. It was Missy when I adopted her  at a Petco adoption fair. She was two, and a terrier mix (at a guess). Story is that she and a number of other dogs belonged to an old lady who couldn’t take care of them, or herself, anymore. The dogs passed to the old lady’s son, who mistreated them and finally turned them over to KARES, a local dog rescue group. She has been fostered since then. She’s about 25 pounds and brindled all over.

She’s tremendously shy, and for the first 24+ hours refused to eat or drink, but that apparently has passed. She leaves the cats alone (I think they scare her). She’s great at heeling when we take walks, but today I stumbled over some rocks rather noisily, and she almost bolted (thank God for the leash) – tail between her legs, ears pinned back, a look of absolute terror. It took me a few minutes to coax her back to me and let me pet her and tell her what a good dog she was — then she firmly led me back home, up the stairs, through the slider, and to the bed, which has become her safe place. I’d really like to get my hands on that “son” and a pile of rocks long enough for him to learn what it feels like to be on the receiving end of terror.

But despite all that we are making progress. I give her lots of love and praise, and she is slowly but steadily relaxing. She’s a young dog, and it’s early days yet.

In the time since then, she has gradually shed her paralyzing shyness — now she’s just shy — and has been a great companion and friend through the cancer treatments and life in general. I’m very happy to have her.

Abby-web

Boarding the carousel.

6/8/2014

Pride goeth before destruction, and a haughty spirit before a fall.

All was fairly well until the 7th, the day my chemo pump came off. If I thought I was going to get off easy, I was a fool (not a new place to find myself, but I did have hopes…) The mouth continued going south: tongue, gums, sides, throat, you name it, until my mouth felt like it was paved with sores and my tongue became the size of a side of meat.

Awake most of the night before, gargling with hot salt water and issuing muzzy prayers to the Clerk of Fate which, because I don’t believe in it/him/her, exercised the option to ignore me. Peg drove me to the clinic the next morning. I am here to testify that my valiant sister was never a Boy Scout but she was prepared with all sorts of things, including a bucket which I made use of as we passed the Coffee Shack on Highway 11 — but that, so far, as been my only upchuck so far.

The chemo pump was successfully removed (I still have the port) and Peg drove me back home. If I thought the side-effects would lessen immediately the pump was removed, I was sadly mistaken. Weary beyond weariness, eating is painful but that’s okay because I have no appetite whatsoever and when I have tried to eat, my mouth has taken exception. In  contrast to yesterday, nothing tastes like anything and I find myself missing the taste of dirt.  I was prescribed a vile concoction called “Magic Mouthwash™” which I do not recommend, and which numbs things up for only a little bit. Light runs. In bed by six. Asleep a little after that, to commence the up-and-down for the rest of the night. I feel like I’m blistered throughout the crotchal area, and let’s not even discuss what my bottom feels like. When I creep back into bed, Abby whines lightly and lays her chin on my shoulder.

Radiation starts again tomorrow. Every Monday they take another X-ray of my behind and the radiation oncologist reviews it, and we talk. If this tumor has not reduced in the past week, I am going to be most displeased. In the meantime, back to bed, or the nearest approximation thereof.

 

Side-effects city, part 1.

6/6/2014

Spoke too soon and jinxed it. By bedtime I had sores on my tongue and the rest of my mouth was in the process of going south on me. Woke up feeling pretty good this morning and drove myself to radiation, but by the time I got back home I called Peg and asked for a ride into town in the afternoon to visit the ENT guy (all is well there – Burny drove me and fed me a drink called Alo, of which I can become quite fond). Everything tastes like dirt, and what doesn’t taste like dirt tastes like shit. My throat hurts. My tongue hurts. The rest of my mouth has also filed complaints. It has been a terrible horrible no good very bad day.

Tomorrow at 8:00am they unplug me from the chemo pump. I won’t have another session for 21 days (maybe, by then, I’ll be in Australia). No idea how long it will take for the chemo to wash itself out of my system, but I will be drinking lots and lots and lots of water in the hopes of promoting that. But I promise you, and myself, that this stuff is not going to defeat me.

It’s 4:42pm, and I’m off to bed.

Exhaustion sets in, and it’s early days yet. Phooey.

6/5/2014

Rethinking my clever shower work-around, since apparently “don’t get it wet!” includes tubing, tape, the whole works. Oh well, nothing harmed and at least I’ll be somewhat cleaner by the time we get to Saturday.

Yesterday I took an (approved) Ambien at bedtime and zonked for the entire night. The downside is that it zonked me for much of today, too. I hadn’t realized how much concentration it would take simply to drive, which for me is usually as difficult as breathing. Radiation, then into Kailua so they could swap out the empty FU-5 pack for a full one, and back home, where I had to miss a lunch meeting with the yarn group because I was too tired. Napped for a couple of hours, still feel drained.

So far this has been the major, and only, side-effect from the treatment, and I am very much hoping that it will lessen in time. The idea of going through another 5 weeks of constant exhaustion is … exhausting.

Oh, yeah, the problem with the dryer is either that the circuit breakers are fried, or the 220v outlet is fried. But Peg did my laundry for me today (that is, tomorrow) so I won’t be too obnoxious to be around. Sisterhood in indeed powerful. And Burny will take a look at the system soon and advise on what needs to be done.

I found the flooring I want. It will be on sale at Costco starting 6/12, and Steve is set to go up to Kailua with me to pick it up. Then major flooring action takes place, and then I get my bedroom back — and not a minute too soon.

Learning to cope with the pump.

6/4/2014

Worked out some strategies last night. I thought about the pump-and-port arrangement: everything except the pump itself is either IV line or package sealing tape, and I was okay to shower with that after the port was installed. So I unhooked the codpiece, reeled out lots of IV line, and used the codpiece strap to hang the device over the shower curtain rod, outside of the curtain. I have a hand-held shower, so once the water was warm I was able to get only certain parts of myself wet and soaped and rinsed — including my hair. Oh, bliss! But please don’t tell Draconis Audrey.

Somehow the IV tube in the codpiece slid around during the night, so that a connector ended up lying on top of the On/Off button, and in my sleep I rolled over on it and turned the entire gizmo off. This I discovered at 1:30 when I rose, as I usually do, to inspect the plumbing arrangements. I turned it back on and reported it (after this morning’s radiation) to Corinna at Kaiser — she’s the hip chemo nurse that doesn’t deliver Talkings To. We agreed that the gizmo was working fine, that I would go in tomorrow as planned, and if I had to wait around until the current dose of 5-FU is used up so that she can insert the next dose, that’s okay.

Yesterday, fortuitously, this showed up, and I wore it today. It was greatly appreciated.

Wonder Woman t-shirtStill tremendously tired, mostly because after I discovered that the pump was off last night, I lay awake for what seemed like hours, listening for the small buzz it makes every 60 seconds as it delivers another dose.