Halloween came and went without much of a blip around here. My daughter did some decorating outside. That’s good, because I never do. I’m terrible about decorating for holidays. Halloween decor has gotten way out of hand, though. Halloween lights? There are Halloween lights now, just like Christmas lights. I didn’t see so many of those this year. The surcharge we all just got in our electric bills might have put the damper on that. Anyway, we just have a nice little graveyard, edged with faux crime scene tape and some cobwebby stuff. It looks very nice and midly spooky. I’m glad my daughter is here to do those things. She makes us look normal.

Rachel, my granddaughter is at that age where she’s almost outgrown Halloween kid stuff or thinks she should have outrgrown it. So, she didn’t dress up, she just wore a tinsel halo around the house, unconnected to any actual costume. She went to do her trick or treating at her father’s anyway. She has a step-brother her age there. Almost no kids came to the door here. It’s been like that for number of years. No little kids and I don’t see many big ones around either. So, we have candy left over. It’s calling, but I’m trying not to listen.

I’ve lost some weight without trying since the whole medical thing started early this year. All my clothes fit better. I think it was mostly from not going to work for six weeks or so. Offices are worse for diets than a dessert cart. In fact, offices like mine sort of are dessert carts in their own way. Everyone brings in any cakes, cookies or candy they have leftover from parties or holidays. They want those calories out of the house. Then everyone consumes everyone else’s leftover calories. I don’t think the system is really efficient.

I’ve been neglecting this blog. I’ve been posting pretty much daily on the other one. Posting has been confined to political rants inspired by the criminally inept response to Katrina by our administration. Time Goes By has been covering similar territory, possibly in a more organized way.

There have been other distractions, too.

Techno distractions

While the big things were happening, the revamped Opera Community opened up. Opera now offers full featured blogs, photo albums and a lot of other community features. After resisting for a day or so, I gave in and started a blog there just to see what it was like. It’s a nice inferface, but with a lot of limitations for the moment. One thing that’s a bit off-putting is that it seems that you have to be registered with Opera Community to post comments on the blogs. That’s a big limitation. Of course it’ll stop comment spam. I don’t seem to be able to find a balance with this blog on that issue. I really don’t want to make comments subject to moderation before they’re posted. I tried that and didn’t like it. Sometimes it’s hours before I get back to the blog and sometimes I miss them altogether. There’s a spam filter plug-in but I’ve gotten false positives with that. On the other hand, I have had to delete quite a few spam comments and trackbacks and close a couple of old posts to comments and pings.

Personal distractons

It’s been a medical kind of week. Nothing unusual about that, these days. I went to the dermatologist for another follow-up. He increased the Targretin to the full dose of 300 mg. That meant going to Bay Shore to get it. Targretin is hell on one’s triglycerides so the doctor increased my Lipitor prescription to 40 mg a day. That’s a lot. I started getting more pronounced pains and when I stopped at my primary care doctor’s office to get orders for bloodwork in a form the insurance company would accept he expressed a lot of concern about the pains. If it’s the Lipitor that’s doing it then it’s a serious thing and I have to stop taking it right away. Now it’s Sunday and I woke up with severe pain all up and down my left leg. I’m not entirely sure what to do. I have to call a doctor tomorrow. I’m not sure which one. And I’m not sure what I should take or not take today. On top of that, I’ve developed a stubborn itchy rash in the last few days. A couple of years ago that wouldn’t be worth noting, but now it kind of freaks me out.

In other personal concerns, Rudy the bassett hound, who is a granddog of mine, is at the vet and under the weather. We’re all hoping that Rudy has a swift and complete recovery. He’s a lovely dog.

I got through the first day back at work in much better condition than I expected to. It didn’t hurt that it was very quiet for a Monday. That was a piece of luck I never expected. And there was a lovely welcome, starting with a sign on the bulletin board by my desk and then later, bagels in the library. Bagels are the basic unit of celebration at our office. There were donuts, too, but I passed on those. Being on medication that’s capable of driving one’s triglycerides up into the low thousands makes you think twice about donuts. There was a lovely bouquet of flowers as well. Now I remember why I’m glad I work there. At least as long as being independently wealthy doesn’t seem to be an option.

I was talking with the office manager about how the doubts I’d had last Friday. That’s when I called her and told her I wasn’t sure I could make it in by today. I’d been done in after just keeping an appointment with the doctor. I recalled that she’d taken a couple of vials of blood. I didn’t think anything of it at the time, but then I recalled that I’d been exhausted the Friday before, which also featured bloodwork requiring multiple. The office manager, who’s lifelong medical odyssey of her own, said that when she was having treatments, bloodwork took it out of her in more ways than one, too. I’m including this tidbit because you don’t normally think of having a vial or two of blood taken as anything that you’d even notice. It seems that under some circumstances you can expect it to be kind of tiring.

Last Friday I went to the dermatologist for my maintenance plan. Happily for me, he said it would be Targretin, at least to start with. Targretin has some side effects, the most serious of them is that it shoots your triglycerides up so high that, if not controlled, you could be in danger of pancreatitus or liver problems. I’ve seen pancreatitus. I don’t want it. But I’m more than willing to give this a try. I’ll be having blood tests every month and if things get out of hand, changes will be made.

So, I got the prescription and we went to drop it off at our local pharmacy that evening. Easy, right? No, of course not. Targretin is apparently only used to treat cutaneous t-cell lymphoma. It doesn’t appear to have any other application. Cutaneous t-cell lymphoma is a rarity. So, the drug costs $2000 a bottle. My insurance covers it. My little neighborhood pharmacy didn’t have any, but they called around and found a drug store that did have it and my neighborhood druggist could get it from the other place. My prescription is for 30 capsules. The drug comes in bottles of 100 and is normally prescribed that way. My pharmacy of choice really can’t afford to break up a bottle, not knowing if they’ll ever sell the rest. It’s possible that I’ll turn out not to be able to tolerate it. I could get hit by a truck. The chances that they’d be able to unload the balance of the bottle to someone else are slim to none.

Ok, so, at my local guy’s suggestion I went to the other place, about ten miles away, to see what could be done. I went Saturday morning. The pharmacist - one of several at this larger place - has been looking things up. Mostly having something rare is a pain, but it does catch the interest of medical personnel of all sorts. He says the absolute base starting dose is 300 mg. My prescription, as written, is for 75 mg. He would be able to break up a bottle, but is very reluctant to fill the prescription when he suspects a mistake might have been made. He doesn’t know what effect the lower dosage might have and he’d at least like to speak to the doctor first. I’m with him on this. I have faith in my doctor, but the practice is part of a teaching university. I think my prescriptions were written by a medical student. It might be that the doctor wanted to start me out slowly, but it’s worth checking to make sure this is right. The only thing is, this kind of practice isn’t open on Saturday. In fact there are office hours only three days of the week. Monday isn’t one of the days either. I left a couple of messages, just in case, but no callback today. So, as far as my doctor is concerned, I started the maintenance meds on Friday night, but in fact I still haven’t even seen a capsule.

Tomorrow is another day.

Yesterday was a sort of a milestone for me. It’s the first time I’d really gone out and spent any time or effort doing something - not counting basic, necessary errands - since radiation began. And I got to spend some quality time with my son as a big bonus.

Before all this started, I’d agreed to do some local promotion for a show that Arlo Guthrie and company are doing for Friends of the Arts, which is a non-profit arts organization. Then I found out about the radiation. Both Arlo’s people and the people at FOTA are nothing if not understanding and kind and they’d have let me out of the commitment. Those are exactly the kind of people you want to follow through for, though. I figured radiation would be over in time to promote for this show, which is at the end of the month. I was sort of wary of heading out on my own, though, with the bouts of weakness that I’ve had. My son is an experienced promoter. When his band was local they did all their own flyering and postering. One day each week would be devoted to nothing but that. As it happened, the first day that he was home and available was the second weekday that I didn’t have to do radiation. The good news is that after walking around in the heat and sun for a few hours, I was exhausted when we got home, but not that much more than I would normally be. A nap restored me to a semblence of functionality, which would not have happened last week. I’d have been out of commision for the whole rest of the day and evening. Progress..for sure.

We also had a very nice time. My son said that there was a world of difference promoting for Arlo as opposed to an unknown local band. We’d go into likely places and they’d take our posters and hang them up for us and ask us if there was anything else they could do to help. With the local band it was more like, “Yeah, whatever, kid.”

That being painless and quicker than we thought it would, I took him to lunch as a thank-you. We were in a town with a lot of restaurants to choose from and we spent a little time deciding where to stop. Here’s a tip for restaurant owners - if you’re closing early in the summer, a sign that says,”Closing at 3 due to hot weather.” is not inviting to potential diners. Not just after three. Ever. Something like, “Vacation hours - 11-3″ would do the trick without suggesting ptomaine. We chose a place across the street that didn’t look like it was having refrigeration problems. It was cool, comfortable, delicious and not in the least poisonous.

Today, on the other hand, I spent all day at home, with my mother. By the end of that day, my nerves were jangled and I was exhausted. I think it’s a good thing I didn’t go into the healing arts. I’m not cut out for it. Of course, dealing with Mom is good practice for going back to work, where the demands don’t let up all day.

Today was the half-way through radiation visit to the dermatologist. At last, some appreciation. He seems pleased with the way things are going. Size isn’t everything, according to him. The “big thing” has lost a lot of its mass. That’s a good thing. And, while early on everything seemed fine with my lymph nodes, by the time this show was on the road there were two enlarged ones. He can’t feel one of them at all anymore and the other is much smaller. Nothing definite has been decided about maintenance. Any way you look at it, it looks like that’s going to involve some kind of medication with side effects that sound problematic. I guess there’s no point in worrying too much about that just yet.

The septic tank got cleaned out at just over double what we’d figured it would cost. Sounds about right. Still, we learned that ours is a fiberglass tank, which is a good thing. It means it’s ok that we chose to have it cleaned out rather than replace it. Or something. Some people fantasize about yachts and villas. I fantasize about living in a condo. Home ownership is the pits if you’re not rich or handy. Renting is not an answer, at least in this area. So what it amounts to is that these days, when I fantasize, I fantasize about a compromise.

Yesterday went downhill fast, or so it seemed. Tuesday’s the day to meet with the radiologist/oncologist so he can see how I’m doing. Once again, he was less than pleased. He felt that the “big thing”, which is a tumor-like mass of tissue on what was once my waist hadn’t shrunk. At about the halfway mark, that wasn’t good. Now it had shrunk in diameter, but I could see it didn’t look like something that was halfway gone. He said maybe they’d have to add more sessions of radiation and I should talk to the dermatologist about other treatments for it. A few extra radiation sessions certainly wouldn’t be the end of the world, but I was just generally bummed about the whole idea that maybe the radiation wasn’t working. In addition to that, two new spots popped up over the weekend, just outside the area of radiation. I hit them with cortisone cream as soon at they appeared and they’ve retreated considerably but it’s another thing to take up with the dermatologist. Good thing I’m seeing him tomorrow.

After treatment it was bloodwork day, so I went off and got that done, and then sort of limped home. To find the basement under water. We’d just been deciding whether to save up a bit and replace our thirty-something year old septic system or just to have it cleaned out thoroughly. The cleaning would cost at least a quarter of what replacement would cost, so it wasn’t a no brainer, even though we didn’t have the money to replace everything at hand. Until yesterday. After some phone consultations with other family members, we arranged for cleaning. No time for saving, or to have someone start a replacement job.

At dinner, my mother looked up and, appropos of nothing, asked, “Have I been going to work?” and then, “I’m confused. Do I still work?” Not in years and years. That’s one of those uh-oh moments. It’s qualitatively different from asking me a few times daily if I’m going to work today, and having me explain, each time, that I’m home for several weeks. Those are the short term memory issues. Remembering her own retirement is another kettle of braincells altogether.

Later on I noticed that the “big thing” that the doctor was unhappy with had changed color. It was distinctly darker and redder than earlier in the day. That doesn’t sound so good, but it seemed to mean it had ratcheted up its response to radiation, so I was not unhappy to see it. This morning, I got up and it had shrunk by a visible percentage overnight, as if in response to the doctor’s disapproval.

Now it’s time to see what today might hold.

All of life’s a circle, they say. When you’re a baby you need naps, often don’t sleep through the night and any little discomfort makes sleep impossible to come by until exhaustion overwhelms everything else. Well, in middle age - here we are again. I would have been a world class sleeper from my youth until about age forty or so, if only they’d given out prizes for it. I could sleep through anything. Somewhere along the line, like many women in my age group, I lost the ability to sleep through the night. At about the same time, I developed the propensity to doze off in the early part of the afternoon. It’s unfortunate that I’m almost never in a convenient situation for a nap at that time. I’m usually at my desk at work on weekdays or out in the car doing errands on the weekend. Normally, I get up a few times a night, but it’s brief. I’m still great at going to sleep. It’s staying there that’s become a problem. Tonight, I’m uncomfortable. Not miserable, nor in any real pain. Just uncomfortable and sleep is eluding me altogether.

I’ve completed seven full days of radiation, which makes me about a third of the way through. I think things are going according to plan. I see the radiologist/oncologist once a week, on Tuesday. He wasn’t thrilled this first time, because he felt that my clothes were irritating the only seriously raised area that I’ve got. It’s in a very inconvenient place. Right on the side of where my waist used to be. I made some adjustments. I pulled out a bunch of pairs of soft baggy pants that I never wear but haven’t thrown out either. I put my jeans away for the duration. I even ordered three dresses. To the best of my recollection, I haven’t worn a dress since my granddaughter’s christening, which was just over eleven years ago. I’ve had pants outfits for any weddings I’ve attended in the interim. I wasn’t even sure what size dress to order, but to tell the truth, shopping and trying things on kind of wears me out right now, and anyway, there’s not a lot of choices left in the stores when it comes to summer clothes. I definitely don’t have the kind of energy it takes to search out clearance racks in store after store. So, I found three on the internet and measured myself to pick a size. We’ll see how that worked out in a couple of days. All of them look casual, comfy and roomy enough not to bother the sensitive spot. Who knows? Maybe I’ll get used to dresses. Not to the point of wearing them during seasons that require pantyhose, though. I’m not going back there for anything.

I think the kinder, gentler treatment is paying off already, though. The area in question is shrinking in diameter, at least. However, it was perfectly well expected that it would get a little uncomfortable before it gets better. It has and I can’t find a position to sleep in for long. So here I sit. Not sleeping because of a minor discomfort. That never would have happened when I was thirty-five.

I got to talking to a woman as we both waited for radiation treatment today. I see her there most every day. You can tell she’s been through chemo by the head covering she wears every day. Every situation has its own chitchat. The small talk in this waiting room usually starts with asking how many treatments a person has, what point they’re at in treatment and whether there has been or will be chemo or surgery. It’s a given that everyone has some sort of cancer, but it seems to be left to the individual to volunteer what type they have. That’s a question that’s rarely asked.

It turns out this woman has lung cancer, and had a tumor in her brain as well. Surgery, chemo and radiation seem to be holding the brain tumor at bay, but the lung has another spot. Her doctor isn’t recommending surgery for that. He’s concerned about her ability to withstand the recovery, given all she’s already been through and apparently the type she has will come back even after surgery. She’s going to get this radiation and if that doesn’t work, then more chemo. She’s on oral chemo now. Then she’ll see. She might opt for surgery later on anyway.

It would be understandable if the picture you have in your mind now is of an almost skeletal, frail looking person, but that’s not the case. She looks healthy, except for the telltale headscarf. She must be at least fifty and her face is relatively unlined. Her color is good. Her expression is pleasant. She told me that most of her family is living with her at the moment. It’s not unlike my own, including a sister and adult children. They’re helping to pay the mortgage. She would have lost the house otherwise. She’s on SSI, which pays her $900 dollars a month. Out of that, she has to give $200 to Medicaid. She wishes she could work, even part time. She says she thinks it would help her mental state. She used to work eighty hours a week at two jobs when she was well. You could see that she raised her kids mostly on her own. I asked, given her work history, why she wasn’t getting SSD, which pays more, but the reason is simple. She’d make too much money to get Medicaid and not enough to pay for medical insurance. There’s a two year wait to get Medicare when you’re on SSD and even then, it might not cover everything. She can’t afford a high enough income to live on. Now that’s a system for you.

As matter of factly as you might say that you hope to work at a job for a given number of years or discuss any other practicality, she said, “I just want five more years. My youngest son will be twenty-five then. I think that’s old enough so he’d be OK, don’t you?” She said this with no hint of self-pity, or even sadness. I hope she gets a lot more than that. I hope she gets to see her grandchildren grow up.

Today was nothing like yesterday. I can’t exactly figure it out. I went for treatment - same time every day. Tuesday is my day to meet with the radiologist/oncologist, and then off for blood tests, which are both once a week deals. Yesterday I went straight home and collapsed. Today, I had to drive several extra miles to the lab for the bloodwork. I got home a lot later. I rested for a short time and felt fine. Did laundry, made dinner, cleaned it all up, even heaved some stuff around in the basement. I guess the current plan is to do things when I can and not count on being able to do things at a particular time. That way, anything that gets accomplished is gravy.

As a direct result of this intermittent exhaution, I’m experiencing something very novel in a good way. Too bad it’s temporary. It’s the odd sensation of not being in a hurry. As I was driving the ten miles or so to the lab, I didn’t feel the need to pass any but the very slowest moving vehicles. I didn’t check the clock much. It didn’t matter what time it was. This was going to take as long as it was going to take and no one was really expecting me to show up for duty at a specific time. The knot in my stomach that tells me I’m cutting things close was conspicuous by its absence. I could get used to this, but I’d better not.

It’s not like vacation. My vacations are usually a source of stress just as much as enjoyment. That week off here and there seems too precious to waste even a minute of it. There’s always a backlog of tasks and then you want to fit in some fun. Fun becomes an item to be checked off just like everything else. No, this is entirely different. Not knowing ahead of time how I’m going to be feeling, that half a day of free time that’s left over after treatment doesn’t loom as something that must be filled in a particular way. I can’t plan to cram it full because that would probably be counterproductive. It’s not about goofing off either. If I can get something done, I will. It’s just an absence of pressure.

Since getting used to it would just lead to a nasty readjustment to the real world in a few weeks, I’m going to try to savor it instead.