Friday, June 29, 2007

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.

Friday, June 22, 2007

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.

Wednesday, June 20, 2007

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.

Saturday, June 16, 2007

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.

Wednesday, June 13, 2007

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.

Tuesday, June 12, 2007

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.

Monday, June 04, 2007

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.

Saturday, June 02, 2007

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.

Friday, June 01, 2007

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?