The SSA joins the fun

8/11/2014

So, up until the 18th century there was a peculiarly evil way of putting criminals to death called “pressing.”  (In the U.S. it was used on one man during the Salem Witch Trials.) The victim was laid flat on the ground while greater and greater weights (usually stones) were placed on him or her, until the victim either came up with the required information, or died. The required information was usually a plea of guilty or not guilty in a legal proceeding; the value of not pleading was that one’s estate did not thereby escheat to the government and was preserved for one’s heirs. None of this is relevant, really, except for the stones part.

Y’all will recall that I was diagnosed with cancer in early May and began treatment in early June. In late June, just as the first round of chemo side-effects were kicking in, I received a letter from Social Security telling me that they had overpaid me, and demanding the tidy sum of $15,507.58 or they would cut off my benefits. This stemmed from the fact that, after Chris dumped me in November of 2012, I kept working to meet our bills, and continued working part-time once I moved to Hawai’i until my replacement came on board. (I had already applied for my benefit because we were planning, then, for my retirement in January of 2013.) I called Social Security to tell them I was still working, and they said they would notice that in the next quarterly report from my job, and adjust things then. The next quarter came and went and I called them again, and was told the same thing. So in the emotional and physical upheaval of leaving my job, moving here, dealing with a broken heart, etc., I put it aside. Until this June.

I wrote back, asking them to put a hold on everything until at least August, and enclosing a couple of my oncology summaries from Kaiser. Silence, until August 1 when they stopped my benefit entirely. So here’s the thing: Social Security is my only form of income. There is no other. I stopped telecommuting in June when I started treatment, and since that job was hourly, no money came in from that. I also stopped teaching, because chemo-brain left me too stupid to do that. So, without my benefit, I default on the mortgage and take up residence in a local lava tube, and learn to like the taste of grubs.

Nope. No way. No how. Uh-uh. Out of the question. Fuck, no. I downloaded and filled out the Request for Waiver forms, amassed an armada of documentation, and sailed off this morning to do battle with Social Security. For this I had to drive to Hilo (2 hours) and take a number and wait. They do not offer appointments. They don’t even have a local telephone number.

My number came up, I hauled out my armada and started outlining the whole sad story to the clerk, and naturally enough started leaking because one of chemo’s less charming side-effects is getting weepy regardless. The clerk gave me a box of tissues and pounded on her computer.

I need to interrupt here to say that the bureaucrats I have dealt with on this island have been, without exception, friendly and helpful, going out of their way to extend aid and comfort, and help steer me through the mazes. I don’t know if this is the aloha spirit, or the result of my approaching problems in a spirit of cooperation, but there you have it. Not just me, either — the folk in line ahead of me were also treated with helpful courtesy.

So, she interrupts me and says, You know what? It’s our fault. Apparently the woman on the phone in Santa Rosa was right: it’s up to Social Security to pick up on such things in the quarterly filings, and they didn’t. Twice. So she said she was accepting the filing of my Request for a Waiver, and in the meantime was restoring my benefit, and I should drive carefully because there’s a lot of hurricane damage out there.

I left the office in a daze, sat in my trusty car for a while, then took the lady’s advice and drove carefully home, while heavy stones were lifted off my chest. I stopped at Black Sands Beach to say thanks to Mme. Pele (I’m still an atheist, but I’m a polite one) and to commune with a honu basking on sands hot enough to blister my feet.

Honu-Black-Sands-Beach-2-8-

I’m not sure there’s a moral to this story, except maybe to treat anything Social Security tells you with a great deal of suspicion, and double-check it if there is any way that you can. And if you must deal with them, try to do it in Hilo, where they treat you like a human being. Mahalo nui loa.

Still on the carousel

8/10/2014

According to the most recent medical visit, all is proceeding as planned. I’m supposed to call the clinic in Honolulu and make an appointment for a PET scan — not looking forward to a day of travel, starvation and being peered at by machines. I’ll also admit to a touch of fear: if anything on the scan lights up, I have no idea what they’ll want to put me through next, and whether I’ll want to go along with it. I believe that they can’t radiate me anymore, but I don’t know if there’s a comparable limit to chemo, and I am not a fan.

Another long period with nothing much to report. I’m on the side-effects carousel, with some falling off the sides, some climbing back on, and some new ones showing up. So far, chemo-related depression and loss of appetite are the side-effects of the past few days, but I’m not worried about the first (since I know what’s causing it) and the docs aren’t worried about the second.

I missed the hurricane. It started to rain very hard in the afternoon but nothing exceptional. When I went to bed it was raining hard enough to convince me that I had left the space heater on – it’s a very loud space heater, doing its business while rattling and roaring away. All the exciting stuff, lightning and thunder etc., started after midnight, but I was zonked. Looks like the Hilo side took the brunt of the storm. There are benefits to living on the leeward side of the island: Mauna Kea and Mauna Loa are two of them, as they preside over our weather and decide what will and will not be allowed through, and in what quantities.

I also missed the primary election, which took place yesterday,  Saturday. Don’t know why Hawai’i doesn’t hold its elections on Tuesday as the gods intended, but I hope they have a good excuse. This is the first election I have missed since I turned 21 and I am not happy about it.

On the other hand, I just spotted the first Java finch I have seen on my property, so there’s that.

Witchy Practitioners

7/25/2014

I knew it had been a long time since an update but I hadn’t realized how long. I apologize.

Shortly after my last update, my daughter-in-law Etta flew in to keep an eye on  me, and the next day the Witchy Practitioners* removed what they promised will be the last chemo treatment bag. With the exception of daily  radiation treatments, I proceeded to sleep  for the remainder of the week. This can’t have been exciting for Etta but she kept me nourished and hydrated, provided such conversation as I was able to follow or sustain, and generally went above and beyond. The WPs promised that the effects of the chemo would return and continue long beyond the actual chemo itself and in this they were not wrong. The side-effects also continued. ‘Nuff said.

They had promised to stop the radiation treatments on the 9th, but the WPs were having so much fun and they claimed I was tolerating it so well (they confused tolerance with toleration, of which I now have none) that they decided not only to extend the treatments by two (bringing me up to my life-time limit of Rads / Grey / whatevers – I should now be able to enter containment domes at Fukushima and Chernobyl with no ill effects but for plenty of profit – gimme my dough) but to focus in on the area of most interest. This means that they bombarded my anus, via my external lady parts, with enough rads to level a small Southern city. Like chemo, radiation is the gift that keeps on giving, so it wasn’t until the following week that the side-effects of the radiation showed up. Curative radiation is made of photons. Curative photons seek folds of skin. Photons + skin previously not exposed to photons = intense sunburn. We all have many little folds in the Area of Interest. Ladies have many, many more. They all burned (I was prescribed a Magical Lotion otherwise prescribed to those with 2nd and 3rd degrees burns) but I still peeled and hurt like the very devil atop a flaming chollo. I took Vicodin – one or two a day did it – I’m a wuss. I took Ambien. When I wasn’t being contrary and argumentative (maybe 1/10th of my waking hours) I slept. The cats loved it. My stalwart daughter-in-law put up with me regardless. She flew out on the 12th and stalwart son Richard arrived on the 13th.

Allow me to say, right here, that without the care and help of my kids, and I include Etta, my life would be hella gloomier and harder to take. To the extent that I am here and as coherent as I am, you can blame them.

Richard is still here, scheduled to fly out next Sunday. This is not a happy prospect but, like Wendy, at some point I gotta grow up. By then I will be able to fend for myself.

I also gotta say that aside from my gratitude for my kids, I’m feeling disgustingly sorry for myself. I have thick dark bars running from my waist south, which don’t show any sign of fading. All my tender bits hurt like hell, some with the addition of the aforesaid devil and flaming cholla; sitting is not a happy prospect. I am so easily wearied that it’s all I can do, without a struggle, to make my bed before I crawl back into it. I want my daddy. Or Bill Rotsler, who gave the biggest, warmest, and most cost-free hugs in human history. Cue the Warren Zevon.

On the other hand, today is better than yesterday. I have an appetite and my mouth is no longer sore, so I can satisfy that appetite. Was out of bed before the alarm rang, and stayed out of it. Enjoyed a beautiful, blue, windless morning on the lanai, surrounded by my furry family. I think my feistiness level is rising, which is also good. I hope to sustain it without going bitter, which is not a good taste, particularly from the inside. And I intend to stay feisty at least until the 31st, when I have appointments with the WPs and do not plan to bring Ms. Nice Guy with me. I may, however, bring my Navajo Rain Stick, just to show them that I got my own magic ju-jus, too.

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* I have decided that all practitioners associated with this event are not to be dignified by other than “Witchy Practitioners,” from the ones who live in tome-lined caves and make hieratic gestures with lighted sticks to those who shake rattles to those who position the Magical and Immense Device of “Healing” to those who provide Magical Little Tubes of Relief in return for  a quarterly of your monthly income.

 

Chemo and I have a re-match.

7/2/2014

Began my second round of chemo yesterday, after my morning 15 minutes with the Cyclops (i.e., the radiation machine). Yesterday was the first day the Kaiser Kona Clinic was in its new digs, and impressive digs they are: out near the airport, plenty of parking, nice modern facade and nice modern interiors, too. The infusion clinic, instead of being divided into a bunch of tiny closets, is now in a big, airy room with plenty of chairs and room. Moving-chaos had been semi-conquered, so everything took much longer than it should have, but I had a nice, comfy chair and a private view of a small heiau (a native holy place), and beyond that the scrubby shore and boats passing on the ocean.

I was able to pull a practical joke on Draconis Audrey, the wonderfulcolorectal cancer awareness chemo nurse who reamed me out over getting a new tattoo a week before chemo. I found a temporary tattoo of the symbol for (ghod help us) colorectal cancer awareness, and applied it to my arm yesterday morning. She almost fell for it, but she’s a good sport and laughed over it. She knows that I know that she’d butcher me if I got a new tattoo.

I don’t know if this round of chemo will be easier than last, but this time I am better prepared: dealing with the mouth sores before they appear by using a mouthwash specific for dryness, dealing with the fundament with prescription lidocain ointment, sitz baths, and a silver sulfadiazine cream that is used on people with 2nd and 3rd degree burns. Also stocked up on a case of Ensure (yes, I have admitted defeat and the stuff isn’t all that bad, really) and a case of Kirkland moist, flushable wet-wipes. Still tired as hell and unable to drive, so Peg & Burny are providing much-appreciated support. Bring it on!

I’m scheduled for another CT scan on the 3rd, to check the progress of things and determine whether the Cyclops needs to be refocused. I’m eager for the results, which I hope to have on Monday.

Still losing hair, skin still very dry and fingernails chancy. But all in all, things are good.

 

A reprieve from side-effects, for now.

6/27/2014

First, I apologize for inadvertently misleading some of you: I am not going blind; I am not losing my eyesight. My focal distances have and are shifting, the result of differences in pressure caused by the chemo, but it is, so far, a minor annoyance. A month or so after the last chemo is over, I’ll check with my eye doc because my vision has changed, but it is nothing to worry about.  And I’m not succumbing to cataracts, either. Sorry for any unnecessary alarm.

Let’s see: the supposed yeast infection isn’t, which is kinda bad news because it means that this discomfort (and I use the term in the same way a dentist does) is with me until the radiation treatments stop, and maybe a bit beyond that. I now have a barrage of prescription goops to get me through this.

My bitching about the apparent uselessness and true misery of the treatments made its way to medical ears. The radiation oncologist took a look last Tuesday and proclaimed that the tumor is smaller (yay!) . I saw my regular oncologist last week, who re-assured me that all is well, he is satisfied with my progress, and he loaded me up with all the prescription meds I had been asking for.

He is, by the way, a child. Dr. Dipak Ghelani, DO, looks no more than 18 and much like Steve Buschemi around the ears. Very knowledgeable, very assured, very convincing, very young. Most of these medical people are very young. Caitlin and I added it up: college, pre-med, medical school, clinical training, internship, residency, specialty board exams, building enough of a resume to land a good job in Hawai’i — still liable to be half my age. Oy!

This past week has been a relatively good one, made better by Caitlin’s presence. I had my hair cut short, because it’s still coming out but this way is less likely to clog the drain. Fingernails starting to flake a bit. Skin so dry my fingertips are shedding little dry patches, which combined with my bad habit of picking at my cuticles is neither a good nor lovely thing.

But the sores in the mouth and the chancy stomach are gone and my appetite is back. I’m still bone-weary and more likely to nap than I have been, but Caitlin and I ate at various nifty restaurants and munched various nifty things, and sat in the shade on beaches to watch the waves come in (one never tires of watching the Pacific). No dolphin, but we did watch honu sporting in the waves off Black Sand Beach, and we shopped for souvenirs for Caitlin’s employees back in NYC. I’m feeling pretty damned good.

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Up a tree at Whittington Beach.

This all stops next Tuesday, when they hit me with the second round of chemo. But my beloved daughter-in-law Etta arrives on the 4th so I know I’ll be well taken care of; she leaves on the 12th and beloved son Richard arrives on the 13th. And, of course, Peg and Burny, my stalwarts, are nearby and on call.

So, nap time. See y’all.

I start to get pissed. Except for Caitlin.

6/21/2014

Sorry to have been absent for a while.

Caitlin has been taking more than good care of me — I have been coddled (but not like an egg) and as a result seem to have given up all personal initiative. It feels wonderful, but I have to start taking care of myself again, at least a little. We have had meals at Ultimate Burger (which is), and the Coffee Shack; we have shopped and gossiped and watched t.v., we have dealt with the animals; she has cooked for me and cleaned up afterwards. It’s fascinating watching her run two businesses in Manhattan via text and cell phone. She is also brushing up on her Spanish, since now that she also directs a restaurant, she wants to be able to communicate effectively with her kitchen staff. I hear her in the living room, patiently repeating sounds to Rosetta Stone and occasionally offering curses in English. I don’t want to think about her leaving.

beach-therapy

Beach therapy

On the less-pleasant front, my hair has started thinning, mouth is still sore, and I’m still bushwhacked by weariness. My eyesight continues to wonkify, and I am curious about how much of this might be due to the effects of radiation, which tends to promote cataracts. I had the beginnings of those a couple of years ago.

I have realized that the discomfort in the nether parts is caused in large part by a yeast infection, which is not unknown in women undergoing radiation, and have combated it with a combination of OTC meds and anger at the doctors I am dealing with, who should have realized that sitz baths only serve to spread it around. Also, the docs are playing a game of hot potato with me: when I started radiation, the radiation oncologist (Wilcox) said that deep sleep was important and they would give me narcotics to ensure I slept. When I called last week to tell them my prescription for Ambien was running low, they said I should call the regular oncologist. Whose office kicked me over to my primary care physician. Same thing happened with my information about the yeast infection, and with my questions about my eyesight. When I asked when they will know if the therapy is working, Wilcox said it would be weeks, if not months, after the therapy stops, when maybe they’ll take another PET scan or maybe they won’t.

I have an upcoming appointment with the regular oncologist, and will put all these questions to him. But increasingly my bottom line looks like this: If I am going through all this misery, both ongoing and unexpected, and they don’t know and seemingly don’t give a shit whether it is working or not, then why the hell continue? I mean, these side-effects are making permanent changes in me and those changes are not likely to be happy. All I have is their word for it that the changes are worth it, and apparently all they have is their word for it, too.

Disrupted sleep, nasty dreams, increasing state of being pissed-off. If not for Caitlin, it would be gloomy dark days hereabouts.

I tell you these things in order to educate. Really.

6/17/2014

I figure the Clerk of Fate has a check-list with my name scrawled at the top, and reviews it daily. Yesterday the Clerk went down the list of symptoms and noticed that I had not experienced explosive diarrhea yet, so last night the Clerk was able to check that off the list.

Here’s a good side-effect, though. For years I have kept a pair of bifocals for everyday life, and another, with a shorter focal distance, for computer work. For the past week I haven’t needed the computer specs. I don’t know why this is, but I like it.

CAITLIN ARRIVES TONIGHT! Just thinking about it makes my arms feel empty.

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.