A cranial prosthesis by any other name

Did you know wigs have names?

They do! Really!

(I think it's to make it easier to order and identify them in the industry. I base that on the fact that the dresses and other stuff created at the children's clothing company I worked for back in the 90's all had names. That way, instead of asking if all the blue dresses with the stripey collars were ready to ship, you could ask if all the "Jennifers" were ready. Lots easier. Especially if "Jennifer" happened to come in more than one color.)

Anyway.

I know you'd never have guessed, but the long brunette is called Delilah.

As in "You know, Sampson, I think you'd look awesome with shorter hair" Delilah. Uh huh.

And the short brunette is called Pigeon.

I'm still trying to figure that one out.

But the blonde? I have no idea.

It was one of the wigs they had out in the salon area. One they'd use when someone was trying to decide if they wanted to go blonde, I assume. (Basing this on the fact that they had one wig of each basic color in the salon, in differing lengths/styles.) Tags and packaging long gone, and maybe the style had been altered some when the stylists were bored? I really don't know.

I'm sure that if I went back and asked them, they'd know. In fact, he may have written it down on the invoice as he created it. I just wasn't paying attention at the time.

Besides, asking isn't fun. Making something up is.

So, any ideas?

Off the top of my head, "Amy" comes to mind (that whole "one night at band camp", Secret Life of the American Teenager sort of thing).

Or perhaps "Penelope"? I've just always liked that name.

What do you think?

how things are (mostly)

When I am having a chemo session, the day before, day of, and day after are mostly influenced by the steroids which I take for those days (technically, I only take them day before and day after, but there are some in the IV during chemo, too). Which means my energy is usually a little high, and I've been known to be bouncy and talkative. If you were after a girls night, I'd be fairly entertaining, possibly even annoying, and not at all in pain or tired (sometimes the bone/joint pain hits after chemo, but it's easily dealt with).

The day after that, I start to get a little tired and spacey/foggy. Functional, but not so much fun or energetic.

The day after that, the fatigue hits, and hangs out for two days. Usually no pain or stress involved, but I may be dealing with small annoyances, like hot flashes, numb taste buds, constipation, or the inability to focus on anything for very long. I'm not much fun for those two days, and may even be short with you; not because you did anything wrong, but because I've not got the energy to be polite or friendly. I pretty much stay at home during this time and try to sleep it off. I usually feel a little better if I can get out and take a walk between naps. (I like a little company on a walk, if I can get it. If I'm up to a walk, I'm usually not too grumpy, either.)

Once those two days have passed, my energy level starts to return to normal.
I usually work close to a full day (6-7 hrs seems to be the average) the first day back, and then work a normal 8 hr (or more) day the rest of the work-days in that week. I mostly look normal during this time, though maybe a little full in the face or with odd-looking skin tone on some days. My taste buds take a little longer to return to normal, so I try not to think about it. Sometimes the work-day is about all the energy I had, sometimes I'm up for an evening out afterward. Depends, as you might expect, on how the work-day went.

I then get a full two weeks before my next chemo session, during which time, I feel, look, and behave pretty much like my normal self. (Except, my sleep cycle is a bit off, so I'm getting to work later and working into the evening. Hoping to shift that.) The main difference is that instead of my own hair, I put on a wig or a scarf every day, so you never know what might be on my head.

But the rest of me is just like I used to be. Or as close as makes no difference.

(I'm not sure if perhaps my personal scent has changed. I wonder about this, but have nobody close enough to me to ask about it. It's the sort of thing a spouse would know/notice, and I haven't got one of those.)

Point is: I'm not sick. I'm not in pain. I can, and do, go out in public. Like a normal person.

Movies and TV have not really been good to cancer/chemo in this respect. They paint it like the person having treatments is gaunt, weak, and in pain all the time. While there may be some kinds of chemo that will do this to a person, and while more frequent treatments could possibly have this effect (such as when the cancer is spreading, or has returned, and it's an all-out battle to save the patient - which is not where I am), the fact is that chemo is not as devastating as it used to be. There are drugs to combat nearly every side effect, and many patients, especially young people like me, can and do manage a fairly normal life most of the time.

My doctors keep telling me: attitude is everything. I believe it.

(Please know that if you know someone who is undergoing chemo who is being totally beaten by it, I am not trying to minimize or give a lie to their experience. Every blend of chemo is different, and every person reacts differently. Please send them my love and hope.)

sometimes

Slow recovery.

I am isolated, here

in my loneliness.

3rd chemo

my latest wig

Trouble with my port, again. Took at least three flushes of saline (which, this time, I could taste, but it wasn't just a salt-water flavor...not sure how to describe it...sort of...wild onion? garlic? just weird) and then, as she's maybe starting to get it to let her draw blood, she says that she thinks, sometimes, the tube gets stuck against the wall of the vein, and when they pull to draw, it just sucks the wall up against the tube, and doesn't let anything out. Makes sense. It did finally work, after laying me down, turning my head, putting one arm over my head, and breathing deeply. Whatever works.

The delay from the port issues delayed the start of the chemo treatment (we have to have blood results back before doing the treatment, just in case my numbers aren't good), so it was a full hour later finishing than it should have been. Sort of sucks up a huge portion of your day when that happens.

Also, Wednesday is a busier day in the chemo room, and they were completely out of snacks, and out of cranberry juice and apple juice. I didn't want grape or orange, but I settled for orange anyway. Should've had grape. My next chemo is also scheduled for Wednesday. I'll have to remember to bring my own snacks. And maybe cranberry juice. If I don't like what I'm drinking, it's hard to remember to keep drinking, and hydration is critical.

Funny moment: I was walking, with my friend "Betty", to the drinks machine, and a nurse from another department came in wanting to borrow something. She came up to me (because I look competent?) and started in about what she wanted. I pointed her at a nurse as soon as I could. My friend and I were a tad confused as to why someone would assume I wasn't a patient, as I had the tube hooked up to my port, and a syringe hanging down from it, totally visible outside my shirt.
I was dressed for work, wearing heels, and had on my nice long wig. And my friend, she's sporting the super-short buzz cut she did to honor me when I lost my hair. So, I guess, I can see why someone would think I couldn't be the patient. We had a good giggle over it, anyway. I am still the youngest person I've seen in there so far for a treatment.

This time, as it was much busier, we got chatting with other patients in the room. Mostly the over-80 crowd. One of the guys had his lunch dropped off while we were there - Tommy's Burgers - I was SO jealous! I hadn't had much breakfast, just a roll, and a yogurt I brought in with me.
I think I heard a Salina accent across the room, but I couldn't be sure. (Dad's family comes from Salina, so I'm attuned to the sound, especially from the older folks.)
The lady nearest me was 83, all the way from Vernal, and had finished chemo in December, only to have more cancer show up in follow-up scans. (At least three nurses came over to explain that, due to her age, she could decide to stop the treatments at any time. She didn't seem to be interested in that option.) She was just starting her new round of treatments. The last one she had didn't cause hair loss, but this one will. She's not sure she cares to get a wig - thinks it'll be a bother, at her age. I told her she should check out the wig closet, just in case. She didn't believe mine wasn't real. I told her I liked being able to put my hair on like a hat, and look fabulous every day without a lot of fuss.
Her sweet visiting teacher had driven her to chemo every time, for the last round, and stayed with her for the hours it takes the meds to drip in. This time, she has to have two treatments, on two different days, each time she comes, so they have to stay overnight. And her friend is just sticking it out with her again. Cancer often brings out the best in people, I think.
These older folks all seemed to handle chemo as just something they did. No reason to complain about it. And rightly so. The alternative is pain and death, probably much sooner than expected.

My bone/joint pain didn't start until the next morning, which is nice. Got a good nights rest and woke up before 8am. I hope my energy holds out through the end of the work-week so I can just take the weekend to recover from fatigue, and be back at it Monday.

I've gained an average of 3 lbs after each treatment. I thought I'd done better this time, but the scale said different. I really don't want that to continue. Six times 3 is 18, and that's way too much extra weight on a person that's already overweight. I'm not supposed to diet or try to lose weight while on chemo, even though I am overweight, so that's frustrating. I didn't find I was quite as hungry after the second treatment, and I really didn't think I'd have gained this time. I'll just have to try harder, I guess. Some of it is probably water weight (thank you, steroids), but my pants are tighter, too. Some that were a bit loose just a few months ago, they aren't loose anymore. If I get to the point that I need new pants, well, I'm just not going to go there. I've got to have control of something, don't I?

Fun with(out) hair

Last week, there were a few days when I just couldn't stand the thought of a wig on my head, even if I did have to go to work. So I went with scarves for two days:

It was interesting, matching my outfits to the chosen scarf of the day, and then accessorizing to play it up. (Yes, you do see some "hair" with the pink one. It's a fake-hair scrunchy. I like it.)
Lots of big, flashy jewelry seems to go with with scarves. And it's been fun, learning how to twist and tie these things. More fun than I thought it would be, actually.

Over the weekend, I went back to wigs. And then yesterday, though I'd been wearing the blonde for work, I switched to the short brunette. (No picture - nothing fancy about it, though I did get lots of comments and compliments on it - even from my pharmacist. Is it bad that my pharmacist knows me?)
I just have to tell you, as much as this one looks like me, and is super-cute and all, it's a lesser-quality wig when compared with the blonde, and it itches a fair bit more. So I'm usually not inclined to put this one on, unless the look demands it.

Today, I felt it demanded it:

The last time I had this much fun with hair and hair accessories, it was the 80's! I used to wear hats, scarves, head-wraps, big fluffy bows...you name it. But then I either got busy, or the stuff went out of fashion, or I just got a little shy about being flamboyant. In any case, I stopped.

Not sure I'll give it up once I get my hair back again, though. Scarves and head-wraps and hats are awesome! And clearly back in style, as I only just recently bought the two larger scarves shown above. I have to agree with my friend Stacy (who went through this last year), I kinda feel sorry for those of you that aren't bald. You may never get the chance to try out all the fun wigs and scarves and hats out there. You're stuck with the hair on your head, bad hair days, and having to wash it and style it all the time. I just put mine on like a hat. Easy.

Just goes to show you: every cloud has a silver lining. Even breast cancer.

2nd aftermath

Along with the almost immediate joint pain (which is caused not by chemo, but by the immune-system-boosting drugs that go with it), I had a low-level headache for a few days, and some sneezing and sinus congestion (which isn't on the list of side-effects, but I've had it both times), and not much else.

Fatigue seemed not to hit until later in the afternoon Saturday. I woke that morning, early (5am) and, after visiting the bathroom (a consistent sort of need, but a good thing, because the chemo and whatever it kills must exit my body somehow), tried to go back to sleep. After about an hour, I gave up, and went up to make breakfast. On my way past the couch in the family room, my older boy asks if I'm alright. He's taken to sleeping there so he can be nearby, I think, in case I need him. I tell him I'm fine, just can't seem to go back to sleep. Figure I'll use the energy while I have it.

I make breakfast, eat, wash dishes, do some laundry, change the sheets, put the duvet outside to air out. I am never this awake, this early.

(side note: I am a lousy housekeeper, in general. I tend to keep up with laundry and clutter, though not obsessively, and let everything else go, washing or cleaning things when a) I can't stand it anymore, b) I need something, or c) I'm expecting company. Sad but true. And now? Laundry is so caught up that I invent things to wash, like the rugs I washed Saturday; dishes are almost always done (almost, because I'd like the boys to do their own, so I leave them, sometimes), and the counters clean in the kitchen; bathroom gets wiped down daily. It's weird.)

I decide that I'll cut out a hat I've been meaning to make, and maybe some other stuff while I'm at it. Somewhere in there, I get a text from Jupiter, and I go out to meet her for breakfast (second breakfast started happening after 1st chemo), and a little shopping at the mall. And I'm totally fine. Energetic, even. (I maybe should have gone in to work, but, I have a life, too, you know?)

Back at home, I finish cutting out the rest of my project, and I'm starting to feel it. At this point, it's early afternoon, and I would have liked to get some more projects going, but I hate to push it, and my back is hurting from bending over while I cut out stuff on the floor, so I decide to rest a bit.

It's after 5pm before I bring in the duvet, which smells like outdoors now (aaahh), and we eat dinner together. Like normal people at the end of a normal day.

It gets a little foggy after that, as the fatigue settled in. I slept a lot, which is good. I wasn't able to relax quite as thoroughly last time, which I'm sure contributed to how slowly I recovered. I still had some constipation (why do I have to be different?), but I was able to keep ahead of it with some fiber tablets, so I felt much better.

Over the next two days, I mostly slept, ate (my ward brought me two meals a day - all super-yummy), and watched a little Netflix on my Kindle. Betty came over and gave me a back rub - I think that was Monday? Like I said, foggy. Somewhere in there, I had a slight fever. As long as it's not over 100F, it's okay, though. Tylenol takes care of it just fine.

Back at work Tuesday, just shy of a full day. I notice I'm warmer than usual, but that's common.

A little down, emotionally, Wednesday. That's part of the package, too. Physically, I felt fine, but I was sort of flat, didn't want to talk to anyone. No particular reason, just didn't feel "happy". I managed to get through the day, though, and it ended well, with Twin1's final interview for his mission papers. We were both glowing the entire time we were at the Stake offices, I think.
(OH MY WORD, THE PAPERWORK IS ON IT'S WAY TO CHURCH HEADQUARTERS!!! yikes. but in a good way.)

Two more weeks of "normal" before the next treatment. Life is pretty good.

(Hair loss seems to be on hiatus for a bit. My head is covered in a fairly even, though thin, sprinkling of hair, which I feel resembles the outer fluffiness of a baby chick or new kitten, without the underlying base fluff. I expect the rest of the hair on my head will jump ship around the 2nd week after this chemo session? As long as I can keep my eyebrows and eyelashes, I'm not complaining.)