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.

Ah, chemo.

6/3/2014

Well, it has been an interesting couple of days. Another radiation treatment today, same crack-of-dawn schedule but this time Peg drove me, because after radiation came my first date with chemo and we weren’t sure I’d be able to drive afterwards. So far, however, all is well.

The radiation treatment was much faster today, now that we have the basics down. 15 minutes with my friend the square-eyed circular cyclops, then off to Kaiser where I sat in a treatment chair and waited (I was early), followed by the First Use of My Port! I’ll bet that Tony Stark wasn’t as eager as I was. First I got Talked To, again, for getting my new tattoo (possible infection! Don’t do that again!), then I got Talked To for covering the port incision site with a BandAid (“But the surgeon told me to!”) and then they numbed my skin, and then they stuck a needle through said skin and into the incision port and connected an IV line to that, and taped everything down tight. Then the MitoMYcin was pumped into the port (two huge syringes loaded with purple liquid, took about 10 minutes to upload), then the IV lines were connected to a device which holds the first dose of FU-5 and is about the size and weight of a 1970s portable cassette player, and that’s inside a highly unfashionable black pouch that hangs off a belt in front of me and flops around like a combination man-purse and codpiece. I have no idea how I’m going to sleep in this thing. Not a fan.

They used that same clear packaging-sealing tape they used after my surgery. “I presume I can shower,” says I. “Don’t get it [the pump] wet! Sponge baths!” How this comports with the sitz baths I’m supposed to take to keep my bottom happy was not covered. I suppose I can unstrap the chemo pump and tape it to the top of my head. Also, if they had told me this beforehand I would have showered this morning and washed my hair, but no. By Saturday, when the gizmo comes off, my hair will look like a salt-and-pepper fright-wig.

All my exclamation points, supra, are rather making it sound as though I had fallen into the hands of the Chemo Tyrant, but that’s not the case. Audrey, the chemo nurse, is very thorough and  very friendly and, as she says, “somebody’s got to be the mommy.” Since I agree with her, I take everything to heart, nod,  and get her to laugh. I sometimes think that getting medical people to laugh is one of my major defense strategies, and that’s probably a good thing.

More radiation tomorrow, on Thursday they switch out the cassette of 5-FU, more radiation on Friday, and Saturdays the codpiece comes off. Then maybe four blessed weeks of no chemo, no codpieces, etc.

No side-effects so far, except that I’m tired. All my yarn peeps gave me big, careful hugs at the group meeting this afternoon, and I am stocked up with enough yarn to make a big afghan for other chemo patients to cuddle under. It’s cold in there.

Introducing Audrey Draconis, and the start of radiation therapy.

6/2/2014

Forgot to tell you that yesterday the head chemo nurse saw my new tattoo and almost took my head off. Possible infection! Possible unexpected reactions! Bad girl! When I demurred, she said that “somebody has to be the grown-up around here” and marched off. Trouble is, I agree with her and, in fact, am happy that she has to be the grown-up and not me. Also happy that I didn’t say anything about a new tattoo before Pueo joined my life. Sotto voce, I have named the nurse “Audrey Draconis.”

The hardest part of today was getting up, groggy with sleep, at 6:15am. I generally feel awful when I haven’t had sufficient sleep, so don’t know whether to attribute this afternoon’s upset to that or to the radiation. Which really was a piece of cake.

I showered and put on my “I’m not dead yet” t-shirt, then remembered some of the other patients I have seen in the radiology waiting-room, people who are not dead yet but are creeping closer by the hour. I changed into a different t-shirt, out of respect for them. As it turned out, I was the first patient of the day so didn’t have to worry about offending anyone on my way in, but still.

Patient_prepared_for_radiation_therapy

photo courtesy Wikimedia Commons

Being in the radiology machine is rather like being inside a Transformer. First, red laser lights are used to make sure the radiation goes where the doctor wants it to, then the bed slides you into the gizmo until the desired body part is reached. “Gizmo” isn’t really the right word. This machine is rather like a humongous glazed doughnut with a bite taken out of it. It buzzes and clicks, an arm folds out then folds itself back in, and the business end of it circles around you with lugubrious dignity, right to left, stopping often to click and buzz as it zaps radiation at the tumors. Takes about 15 minutes, during which I think about cancer cells falling into little bits and microphages like tiny Pac Men gobbling up the pieces. Then off to talk to the on-duty radiation oncologist – one I had not seen before – who needed to give me his version of the Your Friend Radiation Therapy speech. He was very thorough and approved of my gung-ho attitude. He also said that I might get 28 zappings instead of 25, because a lymph node lit up during the PET scan. He said the chemo was going to be awful. He said that by the end of the therapy, I was going to hate his guts. We shall see. Total of half an hour, home by 9:30.

Then I drove myself home, and Steve and Nancy applied the first  coat of paint to the bedroom floor, and I put in a few hours at work, during which I discovered that a co-worker has apparently been assigned to take over part of my job. My supervising attorney doesn’t know yet about the cancer and the treatment, so this was not done as a favor. It pisses me off, because the co-worker has neglected to do an important part of her job since the middle of March, so this assignment is not because she needs more work. So I got all upset about that, before I put it aside for the time being.

I think a nap is in order, don’t you?

Die, you squamous shits!

6/1/2014

Slow the last few days. Bought pale green floor & deck paint for the bedroom floor, which Steve & Nancy can start applying on Monday. A thin coat, then 24 hours drying, then another thin coat, then drying, then we should be able to put my bedroom back together. I’m so ready for that. I’ve also made some financial arrangements that should (cross fingers) let me manage the co-pays without going broke. Thank god for health insurance, thank god for Kaiser Permanente, and thank god for my job, but it’s still going to cost a bushel of money.

I had a good, long phone conversation with my oncologist last Friday. Kaiser rotates its specialists among the islands, so as of today he’s back on Oahu and wanted to check in before he left. I asked him what cancer cells do when they die. He said that (in essence) the radiation breaks them down and microphages chomp them up. This is great, because now I have something to think about during radiation. I’m told that it might be useful to thank the cancer cells for teaching me what they could, and bidding them farewell, but I am still too pissed to go that route. Ka-pow, you carcinomic bastards! Die, you squamous shits!

This reminds me: my mother had a friend named Stella, who was also married to a gringo; they came to California about the same time my parents did. Stella’s husband Max was a firebrand, a radical, and something of a bastard: he often went out to dine with friends but left Stella and the kids at home to make do with whatever meager funds he granted them, and was more absent than present until it seemed that his absences were worth a lot more than his presence. Stella loathed him but, good Catholic that she was, she couldn’t divorce him. Besides, that would have left him free to follow his cock around Berkeley and she refused to give him the satisfaction. She also refused to learn English. And another thing she refused was to curse him as the son of a whore because, she said, she was opposed to cursing men by referring to their mothers. Instead, she called him “un hijo de la mala verga,” that is, the son of a rotten cock. I have always appreciated her inventiveness.

Truth to tell, my most vivid memory of Max is scent-related. We lived a block apart from each other, and one day Max said he was going to cook dinner for both families – a paella I think – and made tremendous preparations. On the day of the dinner, he showed up in my parents’ kitchen with three-day-old fish. I gagged and took to my room and stuck my head out the window and generally behaved like a full-fledged brat, and refused to partake at the top of my lungs.

Aside: when I look back at my childhood I tend to assume that I was a well-behaved, if not actually repressed little girl, but when I dredge up actual memories, um, not so much. That’s something to think about during radiation, when I’m not flinging thunderbolts at cancer cells.

So, it starts early tomorrow (I count waking up at 6:15 as part of “it” since I am not particularly a day person). I will don my “Not dead yet” t-shirt and head north. I don’t expect much to happen (they say the first couple of weeks of radiation are fairly easy) and I’m hoping to stop off somewhere nifty for breakfast on the way back.

Onward!