Personality profile

There are three other profiles to take there; I will probably take them soon as well.

Update

I've been kind of out of it for a couple of days.

My pain has been very high for about a week. My pain level has been between 7 and 9 when I try to move much; even sitting up raises the pain level; but Gods, it is boring lying down all the time. My lower back/top of the pelvis, where most of the damage is, has been spasming any time I move or sit up. Less than fun, and I have no idea what to do to make it better.

The Tamoxifen is starting to affect me. A couple of nights ago I could not get to sleep. Between the hot flashes, the agitation, and my skin crawling, I got to sleep about 5:30 Thursday morning, and slept very poorly thereafter. I still woke up around 10, but I was very very tired. When Housemate came home after work, I told him I was terribly tired, and started to cry. This isn't normal for me. I gave up on making dinner and lay down; I managed to nap for an hour or so till Hubby got home from his evening class. Once I woke and then tried to go back to sleep, I had the same problem again; awake and unable to settle. I'd doze off while reading on the computer, then when I tried to sleep would be wide awake. Again with the hot flashes, agitation, and crawling skin. I made it to sleep a bit after 3, and again woke at 10. At least once I got to sleep last night, my sleep was restful and restorative; there just wasn't enough of it. Again today I've been tired and weepy, but not as badly as Thursday.

I called the oncologist yesterday after I woke. Got a call back from the nurse. Apparently the first med they prescribe for bad hot flashes is Clonidine, which I already take to control my blood pressure. So the nurse had to talk to the onco for another prescription. I'd asked her to call me before calling in a scrip, and she didn't call back till today. Then she called after office hours, and the kid accidentally dropped the call when trying to get it to me. The nurse called back, and it went straight to voice mail. Once I realized that and listened to the message, the nurse said that the oncologist wanted to prescribe Bellespa, but my pharmacy doesn't carry it. She said I needed to find a pharmacy that carries it.

One, that ain't my damn job. To be honest, I'm not sure a pharmacy would tell me if they stock a drug like that -- it sounds pretty potent. Two, I'm a chronic pain patient. I cannot be getting my prescriptions from more than one pharmacy. Third, my cursory research showed that the drug, which is an ergot/belladonna/phenobarbital medication, is contraindicated for most human conditions and many of my other meds. After reading through the monograph on the stuff, I think the hot flashes will be more bearable than the drug. It is indicated for migraines and hot flashes. The nurse had looked at my current medications, but wasn't concerned with most of them, and with the contraindications on this drug, I think that was an error. I can't say I'm particularly pleased at the moment.

On the other hand, she told me I could take cohosh. It may be next month before I can buy it; I need to check local prices, but it is all right for me to take. I understand black cohosh is the preferred one for menopause. The nurse did say "it's just an herb," and didn't know that it would be effective. It also doesn't have two pages of contraindications with it. And based on the price at that link, I should be able to find it affordably here in town.

So Monday, rather than telling the nurse which pharmacy they can call the prescription in to, I'll be detailing my concerns with the medication and having to find another pharmacy, and probably telling them to go hang and just taking herbals. At least herbals don't have common side effects of drowsiness (I'm already tired all the darned time), dry mouth, and constipation (both side effects of my pain meds as well; I don't want to bind up completely and I'd like to continue to be able to talk), and contraindications to most everything else I take, including those essential pain meds. I suspect any other med they come up with will be similarly flawed, so I'm working on getting used to the hot flashes.

I don't think the family grasps how badly I feel right now. It's kinda hard for them to tell when I'm usually in pain anyway, so I suspect it's not obvious to them that at the moment I'm bloody miserable, compared to my usual level of pain and discomfort. I don't want to stand up on a soapbox and announce how I feel, but it would be nice if they could read my mind and tell that I'm feeling worse than usual. I know that's not reasonable, but that's how I feel. Why can't they tell I'm in bad shape without a large-print sign or a monologue? Of course, if they tried to coddle me, I'd probably hate that too. One of the perils of feeling less than spiffy.


On the more interesting side, the sprog has announced that she wants to try out for sports. I've scheduled her for a sports physical next week, so she'll be good to go for the school year.

Hubby has passed the last class he'll be taking before starting employment -- he has a few more days in class, and will be sending out resumes and starting to interview next week. This weekend, I'll assist in working on some documentation he needs to finish and helping him on his resume.

He is attending a welding inspection class through the AWS (American Welding Society), which will give him valuable contacts, knowledge, and manuals. That's the week after next. He's planning to find a company that will work with him to allow him to finish the 22 days of classes he has left in order to get his advanced welding certificate. As hard as welders, especially good ones, are to find, I suspect he will find an employer to work with him. Of course, with me, he has to make sure the company has decent health insurance -- so he has several factors to consider in choosing his next job. We're all looking forward to getting back to a more normal life.

Good Boob News!

I have my prosthesis, and I think my back likes having the weight back. It has its own box where it is to rest when I am not wearing it, but I'm supposed to wear it when I'm awake and up. So I have it on now, leaning but not lying in bed, and it feels pretty comfortable.

The second bit of news is that my genetic testing came back negative. I do not carry either of the defective genes they know and can check for. That means no need for prophylactic surgery, and though my daughter will need to start mammograms early, her risk is not as great as it could have been. My sister and mother need to keep up their screenings, but they already know that and do so. Whew.

Heat and hot flashes

It's been pretty darned hot here -- we've broken the heat record with three digit temperatures several times. And July and August are typically hotter than June. Sunday and Monday were 100 or so, and yesterday hit a high of 95. We have an air conditioned house, but the kitchen is poorly ventilated and the a/c can only do so much.

I've also been dealing with hot flashes since Friday -- big ones that leave me feeling nauseated. Heat plus hot flashes is definitely not fun. The hot flashes are definitely worse now than they have been; I do think that it's the Tamoxifen.

So last night after 11 pm, it was finally cool enough to deal with the kitchen. We turned on a fan in the dining area and pointed it into the tiny, narrow kitchen space. I proceed to slice carrots, break apart broccoli florets, slice green onions, make a balsamic vinaigrette, cook tortellini and spaghetti, and make a tortellini balsamic salad and a peanut noodle salad. I enlisted Hubby's assistance to mix up the salads, and at the end of the second pasta salad, I rather stopped functioning. Fortunately, despite the hour, Hubby was still up, and he stirred the peanut noodle salad up while I wilted. I slunk out of the extremely hot kitchen, feeling rather unhappy that I hadn't been able to finish the second salad.

Then I realized that in the space of an hour, I'd essentially made two full meals. I let Hubby put the second salad away and came back in here and laid down in front of the a/c vent and relaxed.

And I don't have to cook today or tomorrow -- Doug is supposed to avoid cheese, hence the peanut noodle salad. Everything should be chilled and ready to eat today.

What's important to you in a computer?

Because Gods above, the most important thing to me when I am looking for one is that the case be pink.

This is one of the most egregious, anti-feminist and anti-female products I have seen in years. The last one that raised my hackles like this was before I was married, and was called something like "HER Tool Kit." It was cheap, contained poor quality tools, and had pink handles on those cheap tools. You could even get a pink garden hose. This is, I think, worse. The ad showed two women admiring the computer, one in a shirt that matched the case. I'm offended enough that I don't think I will buy another Fujitsu computer in my life. And while my current laptop is an HP, the previous one was a Fujitsu. None of my future ones will be, however.

We got to see the Space Station!

The International Space Station (ISS) rose in the West at 9:32 MDT, and processed across the sky for 3 minutes. I missed the very beginning and ending, as I was in my chair, so the trees obscured my view more than the rest of the family. If you live near me, you can find when the space station will pass overhead again at this link: http://spaceflight1.nasa.gov/realdata/sightings/cities/view.cgi?country=United_States®ion=Colorado&city=Denver If you live elsewhere, you'll need to adjust the end of the link, or go back up a ways to where you can select your location. The chance to see it actually pried Girlchild away from the TV.

We tried to see the ISS and the shuttle last night, but we had an overcast sky. I'm glad the skies were clear tonight so we could see.

Genetic Counseling

I saw the genetic counselor. I have a 16% chance of having a mutated breast cancer gene, which she termed "moderate risk." If I have one of those genes, I have a 30-50% chance of ovarian cancer, which is a high enough chance to merit prophylactic removal of the ovaries. I'm unlikely to have BRCA1, the 16% is for BRCA2.

I signed the consent form and they took blood. She believes that Medicaid will pay for the genetic testing but we will double check with the lab first, since the testing is over $3K. Assuming that the testing is covered by insurance, I should hear inside three weeks with the results.

Three weeks is a long time to wait on tenterhooks. Thoughts for normal genes and a negative result from the test are welcome.

It never freaking ends.

Latest Doctor visit

I saw the surgeon Friday. She says I'm healing nicely, and the remaining "swelling" is subcutaneous fat, and the lumps will improve over time. If I can't stand it, she can remove my "armpit boob," though it is definitely smaller than when I first saw it and panicked, and should get smaller and redistribute. She explained that had she taken that, too, I would have wound up with a scar going all the way to my back, and that is not a preferred outcome. And the tissue isn't diseased, so there was no real reason to remove it.

I asked if I was "cured," and was informed she doesn't like to use that term. I am "disease free." I see her again in 6 weeks; after that 3 months, and then 6 months after that. I will continue to see her every six months "forever" as I am now at increased risk for cancer. I get to see the oncologist "forever" as well.

I know other folks who have long term relationships with their oncologist. This is par for the course. She said if I got tired of seeing all those doctors, she'd rather I kept the oncologist. I told her that since I'm disabled, I have plenty of time to go to doctors. I guess cancer is forever.

Whee, new purse!

For years I carried heavier and heavier purses. With the back pain, that became more than a little problematic. So last year, I switched to a backpack, which I could hang over the back of the manual wheelchair. When I switched to the power chair, the chair back was too thick, making me either hunch over or lean against a partially filled backpack. So I switched to a flatter shoulder bag, which was designed to go on the back, but I could wear on the front. As the weather got warmer, the large black shoulder bag was getting cumbersome and overly warm.

We'd gotten the girlchild a cute little waist pack (aka fanny pack in the US, I know it means other things in other countries) for her birthday with skulls on it. Unfortunately, it was a $5 bag, and the stitching failed after a few weeks. So I went to beltoutlet.com, the same place I'd bought my shoulder pack, and ordered her and I each a fanny pack. They're both black leather; mine is a bit larger than hers, and hers came with a water bottle. She's thrilled with her pack, as she won't use a purse, and loves having the water bottle carrier on it. I switched to my new waist pack, too. It held my big billfold, though I did take some of the things in it and stow it in separate smaller pockets in the pack to make the billfold narrower. I'll have to carry my paperback separately, and there are some paperwork things that I can't carry in this pack, but it's small and will be mostly out of my way, which beats the shoulder purse trying to drive my chair.

And swapping purses is always a fun mini-spring cleaning for me. Even if I will spend the next couple of weeks learning where I tucked everything in this purse. There's even a pocket for my bus tickets.

Update

Mental: I'd been seeing a temporary therapist since I got the cancer diagnosis. She's nice, but very formulaic and not someone I really wanted long term. I need someone who seems actually interested in me and my issues to be able to really dig into the old stuff I carry around. So at my last visit, we agreed that I would wait for the new therapist coming on at the mental health center. One should be hired by the end of the month. One of my problems is that when I find someone who understands chronic pain, their own pain gets to them and they have to stop.

I saw the meds NP last week for my usual appointment; He asked what my depression level was on a scale from 1-10. I said 5. He thought that was a terribly high level. I told him I was functional and could accomplish most of what I needed to do, just like when my pain is at a 5. He finally accepted that for me, that was a good level. Honestly, I've had depression for so long I don't know what it would be like to be free of it. I can function and enjoy myself, but I know that the depression is right there, right under the surface. Maybe that makes it a 3 instead of a 5? Those scales are so arbitrary.

Physical: My hair is thinning noticeably, according to my stylist. This was the first time he saw me since before the surgery; I hope the hair recovers somewhat. I am a bit vain about my hair, and if I keep losing it will probably switch to wigs rather than run around with sparse hair. I'm fairly well healed from the surgery at this point. I see the surgeon Friday, and expect to have a prosthesis prescription when I leave her office. Bought some bras with pockets, and the pockets are apparently designed for pouring beans into. The pocket starts at the bottom, of course, and is sewn up onto the strap, where there is about a two inch opening. Hard to put a prosthesis in that small a hole! I need to try on the bras, mark any changes, and send them back for adjustment, including a pocket hole big enough for a prosthesis. I'll probably end up with about 2/3 of the cup having a pocket on the back, which should work.

As I mentioned when I started the drug, I started Tamoxifen at the end of Memorial Day weekend. I have had more hot flashes than before since, and skipped the next period with spotting. Since I'm at that point in perimenopause, I don't know exactly why I skipped; I'm going to ask for hormonal blood tests to see if I am still fertile when I see the GP next week. I rather hope not; it just means hassling with b/c, since I don't think I'm up to bearing another child.

My pain pretty much plods on at the same levels. I wish I could walk. Alyria and I did get summer rec center passes which give us access to the pool; the gimp rate for the summer was pretty decent. I can "walk" to the pool from home, and with a pass, can take just the time I need while I'm there. Now, to get the urge to swim on a day when the pool is available -- today is rainy and cool. Pleasant enough, but not for swimming.

We need new beds. Our bed is just tired and needs replacing. I'm really leaning toward the Sleep Number bed; my folks have one and like it, and the adjustability sounds quite appealing. The kiddo is complaining about her bed -- she has a bunk set and now wants a double bed. I told her that once her Dad is working, we would put it on the list, and in the meantime, I would look for an Aerobed on sale to replace her mattress. We bought her bunk bed set used when she was 4 or 5, so yeah, the mattresses are probably about done. All of us get to wait a while yet, though. The worst part about our bed is that Doug thrashes about at night, and that can cause me pain depending on my position. If I'm not flat and solid on my back, I can feel it quite clearly. There are nights while I'm still up and on the computer and he's not sleeping well when he'll change position, and I will have to bite back a yelp so I don't wake him. Hardly an ideal situation.

SSDI is, of course, still up in the air. I will write a note to take to my doctor asking for the full rundown on my back; all diagnoses and the chronic intractable pain diagnosis, and will send that to the attorney in faint hopes of an administrative decision. Doubt it, but I'll try.

Hubby is getting more involved with the American Welding Society, and is enjoying that. He will finish what he can of school in July, start looking for work, go to an AWS class for a week, and then go to work. He plans to find an employer that will allow him to go back and finish his last few classes during the day at some point so he can get his advanced certificate. We're hopeful he can find a decent-paying job with insurance starting right away; I'm expensive to keep without insurance.

I got to go to the zoo for a few hours on Sunday. Regrettably, it wiped Hubby out. I made him promise not to go out with me, even if I'm cabin crazy, if it will impact him the next morning getting to school or work. Going out helped my mood some; I'm still irritable and cranky.

Strange Anatomy

Nerves are funny.

So, my scar on my chest is healing pretty well, but sometimes it feels tight. So when it tightens up (doesn't restrict my arm movement, just feels tight across the chest) I try massaging it.

Now, that's a weird feeling.

Many nerves were cut and destroyed as part of the surgery. I have numb spots on my chest, in my armpit, and even bits of my back on the left side. So I expected it to be mostly numb, but thought I could ease the muscle tension. It's weirder than that, though. When I rub my chest over the scar, my hand can tell I'm on a flat chest. My skin, however, reports that I'm rubbing skin a fair distance from the chest wall and at an angle.

I wonder how long it will take to adjust to this. By which I mean the skin adjusting to report I'm rubbing my chest rather than the top of my breast. It's not bothersome, just odd.

Detachable organs

I made it back to the Open Full Moon this Friday. I'd put a blurb in the newsletter that I would be there after my surgery, and a few extra folk came out to see me. I was told repeatedly I looked great, and I did feel pretty good.

Anyway, at the beginning of the meeting, before the presenters for the month do their ritual, Catherine (the VP of the church of which I'm president) and I make general welcome announcements and the like. This time, I started out by telling people that I was back, and better, and still looked pretty much the same, except that part of me was detachable! I then pulled my fiberfill prosthesis out, and plopped it in my lap (I was in my wheelchair.) The whole room cracked up, and it definitely eased the tension. I couldn't easily stuff it back in while in the center, so I kept it on my lap as we made our usual announcements. When we asked for donations, Mari (dear friend of the family and former covenmate) ran up and tucked her donation in the empty bra pocket.

In retaliation, while going round the circle and asking everyone if they had announcements, I plopped the fake breast in her lap. (This one is a lightweight, fiberfilled one for just post-surgery, before I get the heavier prosthesis actually reasonably fit to me.) She picked it up, and announced it had rocks in it. I said yes, that way it doesn't float up to my neck. She suggested we put a squeaker in the fiber. Hubby likes the idea -- we may well do it for MileHiCon. I retrieved my breast and finished the walk round the circle.

Right at the end, Hearthstone's treasurer and her husband were sitting, and she started telling me to give the breast to her husband. I took one look at him, and the poor man was horrified! So I said that I'd known Mari for a lot of years and that I didn't think I knew her husband well enough to hand him my breast. The whole thing was done in silly and good-humored fashion, and as a result, no one treated me like I was either fragile or contagious, which was a major relief. I don't fancy being treated as either.

Argh...

Gotta do something about those sleep habits. I'm up way too late railing at the Universe, and then when I go to sleep, I have nightmares, and continue to have them all night.

The first one last night was about boiling bats into a stew, and the only bats I see on TV are with Jeff Corwin, who wouldn't stew the bats, he'd cuddle them first.

The last one was about working, in the job I used to have for some software company, crammed in a decrepit two-story mobile home (yes, I know they don't have two stories. My subconscious doesn't.) with everyone else working on the team, and the last thing I remember before the kiddo woke me was discovering that most of us were working for free. Desperate much?