Category Archives: Health

And out the other end

10/28/2014

So, to get the most important news out of the way: It worked. Six weeks of radiation and two bouts of chemo, and my recent PET scan shows no, repeat no, suspicious masses of any sort. No cancer, no sign of metastases, all is well and more than well.

However, I do need to tell you about the Side Effects Fairy, who unlike the Tooth Fairy is both real and malevolent. Remember Glenda the Good from the movie version of The Wizard of Oz? The sparkly, cotton-candy-pink goody-two-shoes who appears in a bubble, smiling like an idiot and waving her wand about in little circles, sort of like Queen Elizabeth greeting the peasants or the Pope scattering blessings? The one who waited until the very end of the movie to tell Dorothy how the Ruby Slippers worked (if she had done this at the beginning it would have saved Dorothy et al. lots of trouble). Anyway, yeah, that one. Since losing her job at MGM she has taken a very well-funded position with the pharmaceutical industry, and visits recovering cancer patients even after their therapy is over to remind them of all the good shit Big Pharma has done, and continues to do, to them. She appears without her bubble, but with that goddamned wand and a clipboard, and says in saccharine tones, “Well, hello there, sweetheart! So glad to see that you’re feeling well! Well, let’s just take a little stroll down the Side Effects list, and — Oh! My! You haven’t had sores in your mouth for weeks! We can take care of that for you. Ding!” and the bitch whacks you upside the head with that wand and away she goes and your mouth goes to hell. Until the next time, when she may note that the mouth sores have disappeared but what about a little explosive diarrhea? Or some nostalgic nausea? Oh, I know, I’ll bet you would just love to revisit the “energy level of a dead dishrag” moments again.

I always did like Margaret Hamilton better.

So the treatment is over with and was successful, but the maladies linger on. They are getting better as, over time, the SE Fairy loses her grip, but just when you think you’ve swept her out the door … All in all, though, it ain’t bad, children. In fact, it’s very good indeed.

My weight loss is leveling out at about 30 pounds; I have less hair than I had going into this although I hope that some of it will grow back; my energy level is still low, but I’m alive, improving, and apparently on the way to a full recovery. I’m managing my ongoing depression pretty damn well. On 11/5/14 I fly to Honolulu (my valiant sister coming with me) to have the port removed, and that, I believe, will be that.

Like an Oscar recipient, I have a long, long list of people to thank, but unlike an Oscar recipient I am not going to list names. Y’all know who you are, and what your support has meant to me since last April. I am happy, and healthy, and am even writing fiction again. My battle with Social Security is ongoing, but even that isn’t getting me down.

So thank you all again, and may the Clerk of Fate rain happiness and good fortune down on all of you, as she has to me.

Dieseling toward the end

9/4/2014

Long time no news, but it’s all good.

I received a formal letter from Social Security saying that they are looking into my request (the one where they are politely asked to fix their fuck-up) and that my monthly benefit will not change until everything is resolved. From what I gather from online sources, this takes months. So, sigh of relief.

Had my last follow-up visit with the radiation oncologist today: everything looks fine, no external sign of any continuing cancer, and I am healing well. We’ll know more after the PET scan in October, but everyone is optimistic about that. Me, I just want to get it over.

I have been losing weight at a tremendous rate: almost 20 pounds since the beginning of all this, and 10 just within the past month. Since I probably had about 30 pounds I could safely shed going in, nobody is worried as long as the appetite loss doesn’t interfere with my healing. Bought my first pair of size 10 jeans in close to three decades, and am feeling rather smug about that. I have a pile of size 14 jeans and shorts to truck down to the local thrift shop. Nota bene: I do not recommend chemo and radiation as a weight-loss measure.

I’m hoping that if nothing lights up in the next PET scan, the oncologist will decide to get this port out of my chest — the slimmer I get, the more it sticks out and it’s sensitive, especially when one of the cats walks across it. I’ll be happy to see it go.

Further reports as events warrant.

… later

Apparently I typed too soon: this afternoon I got a call from Lorena at Social Security in Hilo, who said that my request for a waiver had been turned down, but she was willing to make me an offer whereby instead of snatching my entire benefit, I would only have to pay them $500/month. I pointed out that the original error was not my fault; she said it was still earned income. I told her I wanted to file an appeal and she said she’d send me the papers. Not the kind of hassle I need, but I can’t survive on $1400/month, not unless I eat the cats.

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.

20130914_115730

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?