Thursday, August 30, 2007

I had a visit today with my Oncologist and my labs show whatever they are supposed to show to clear me for round three of chemo on Tuesday. I had to go to an off site lab yesterday for my blood draw because apparently Georgetown Hospital lab has given me the boot. They don't like how Aetna pays, or more to the point, how Aetna doesn't pay for my labwork so they asked me to go elsewhere.

I meant to call Aetna to harass them about why they are paying so little for my labs. When I look at the claim online it looks fishy. There are three numbers to look at on each claim. Column one is the amount the provider submitted, the second column is the Aetna agreed pricing which is usually a fraction of what the provider asked for and the third column is the amount Aetna paid. Now on most claims, columns two and three match. If Aetna agreed pricing is $100 they cut a check for $100. If the procedure or test is not covered or denied, the Aetna agreed pricing is $0 and Aetna pays $0.

Now on these particular lab claims, the Aetna agreed pricing is there, say at $100 and column three then says Aetna paid $0. So if there is an agreed price, why didn't Aetna pay that agreed price? Something isn't right with that. And I had planned to protest because this fishy claim b/s got me kicked out of the hospital lab and now I have to drive somewhere else and have it done. Not so easy with a two-year-old and, oh you know, Cancer. But after talking with the front office gal at the Cancer Center, I don't think it will do any good. The hospital lab has a policy now not to do Aetna patients from outside the hospital and the cancer center is not part of the hospital. So I can either call Aetna and bitch and still not get to have my frequent labs done on site or I can let it go and bitch here and to all my friends and still have to go to CPL for my labs. Sigh.

The appointment went well, though. We discussed the fact that last round I still spend the afternoon/evening/night of chemo pretty sick. And that taking the phenergan for nausea didn't result in any measurable relief from the nausea, but did result in me twitching for a several hours and unable to sleep. And then he told me that yeah, phenergan does that and that Benadryl can counteract the twitching and wiredness. I wanted to ask why the hell someone didn't tell me that when they gave me the phenergan in the first place? Man. So now I know to take Beneadryl for the twitches and phenergan for the nausea. Of course phenergan doesn't do much for the nausea, but I fear what things would be like if I didn't take it. Shudder

We also talked about how difficult the bone pain side effect is to control. I thought he would offer me some kind of pain meds that may or may not make me sick which would lead to more phenergan which may or may not help and may or may not give me the twitchies. But instead he offered a trial of doing this round of chemo without getting the Neulasta shot. Instead we will do a blood count that week and see how low my counts get. If they get too low, I will have to get a shot or three of Neupagen, the mother drug of Neulasta that lasts a day instead of a week. Neupagen may cause the bone pain too, but I am not sure how much.

But if my blood counts are acceptably low, cause they will be low, then we will not do the Neulasta from here on out. Which would mean possibly two feel-good weeks instead of one each round! That would be nice, but I suspect that my counts will be too low and I will need the shots. I just don't want to get my hopes up. It is worth a shot though. Ha ha, worth a shot, get it? Heh.

After the appointment, Mom and I took Jackson to the park for a bit. It was too early for work, but not enough time to go home. Jackson had fun throwing pecans in the water and climbing the slide - but not sliding down it - and swinging.

He wanted to sit in the big kid swing, but its precarious nature got him pretty scared. He kept saying, "It's ok, it's ok!" Which is what he says when he's scared. As opposed to "I gotcha, I gotcha", which is what he says when he is afraid of heights.

Then it was off to work where he slept a good three hours while the guys finished up the Lend Me a Tenor set and I worked to show Larry a few things in the office for when I am out next week. It has been good to be back this week. Tomorrow, Tenor opens and we have our opening night gala next door at a cute shop called Annarella. Got all the food donated by local restaurants and we'll serve wine and schmooze. It should be a busy Friday getting things ready for the show and gala. Then I am heading downtown to see a show at Stubbs. Hope I have the stamina to get through it all. I haven't had a late night out in some time. Should be fun.

Wednesday, August 29, 2007

Ok, I had to kick my son out of the house and bribe him with playing with the running hose so I could get this done and posted within the 72 hour time-frame of the contest that The Holmes is hosting. But I just had to give it a go. So here it is.

I have decided that my recast of the Star Wars characters must come entirely from the cast of the other greatest science fiction work in modern times - Battlestar Galactica on SciFi Channel.

Han Solo would have to be played by Katee Sackhoff since her wisecracking, rule-breaking, ass-kicking portrayal of Starbuck just fills me with girl-power goodness. I love her. Love her. Want to be her.

Obi Wan of course would be Edward James Olmos, the commander I would follow anywhere, wouldn't you?

Tricia Helfer, the gorgeous and dangerous Number six must play Darth Vader for she makes being the bad guy alluring and powerfully attractive, just like the original.

Jamie Bamber, the brave and true Lee Adama would be Leia. Smart enough to be a leader, but gets in a lot of scrapes and is in the wrong place at the wrong time so often. Always in trouble, he, but usually not of his making. Incidentally, did you know he is British? Speaks with a nice high-british accent - very unLee of him.

Sheesh, I have to keep running back and forth from the back porch because the hose keeps kinking up and making the boy-child mad.

Ok, so Luke. Who to play Luke? I think Grace Park, the beloved Boomer. As I am waiting on Season 3 to be available on Netflix, I don't have the answer to the question, is she good or is she evil. And if you know don't tell me. I just think she would do well as the conflicted, often cocky and slightly vulnerable and misguided Luke.

C3P0, though a robot, would be played by the human Aaron Douglas - Chief Tyrol, the loyal and eningeeringly genius.

Chewbaca, meet Allesandro Juliani, Lt. Gaeta, the friendly and efficient guy in charge of jump coordinates and usually narrates the battles in the command center.

R2D2, hmmm. I think I will make you Colonel Tigh (Michael Hogan) cause you mean well, but mess up just a bit too often. And I suspect you are a closet drinker like he is.

But what of Gaius Baltar and Laura Roslin? Where should they go? Hmm. I am at a loss. Anyone?

Ooh, ooh, Yoda! Laura Roslin (Mary McDonnell) must be Yoda!

And Gaius should be Lando Calrissian.

Um gotta go, boy needs dinner and attention and doesn't care that I am working on something so important.

Tuesday, August 28, 2007

I woke up this morning feeling...good. I think I feel good! My bones don't hurt. My sores don't hurt. I don't have indigestion or weird pains in my belly. Hmm. I really do think I feel pretty good. Does this mean I get a feel-good week after all? I am cautiously optimistic. I have to take my antibiotic in a few minutes and that may be the cause of my indigestion of the last few days, plus the bad taste. But maybe today will be a good day. I hope so.

Mom came and got me yesterday morning and took me and Jackson to her house for the day. I wasn't feeling well as usual, and she had housework to do so she decided to keep an eye on us out there. I felt pretty crappy most of the day. But Jackson had a good time playing outside in the pool and with the hose. He always has good outside time at Grammy's house.

Nurse Mom looked at all my little sores and proclaimed that I have a staph infection and that we have to treat them all like little wounds and be very careful not to spread the infection any more. She says everyone has staph on our bodies all the time, but we are generally able to keep it in check. But because my immune system is hosed, thanks to chemo, I could end up with staph infection everywhere. I hope this antibiotic takes care of it. But I worry it may turn into that really serious staph infection that has made its way out of the hospitals and into the general community. MRSA is no joke. So please hope with me that I can kick the staph and don't end up seriously ill or just disfigured by it. Wish I only had cancer to worry about and not all the illness, infections and possible damage done by the cure for cancer. Sigh.

But lest you think I am complaining too much and not being positive, never fear. I may be succumbing to the mundane crap involved in chemo, but I still plan to kick the ass of cancer. I am just getting kind of cranky about it. The novelty is gone and I am left with a little dread at the prospect of four more months of feeling ill, etc. I just want to cry, "I have been so brave, can't I get time off for good behavior like Paris and Nicole?" Alas, cancer does not care about good behavior. Or Paris and Nicole.

Sunday, August 26, 2007

Yesterday, after a massively needed grocery run, David, Jackson and I crashed the Sam Bass Theatre's Membership BBQ. We aren't currently members, shame on us, but we decided to show up anyway. I knew there would be a few people there we hadn't seen in a while and that Sam Bass was collecting for Ronni, Jim's widow, and I figured that would be the easiest way to get something to her. So we headed on up for an hour or so. Saw some old friends and caught up and had some cake. Jackson loved the cake with the choo choo on it. Sam Bass Theatre is an old train depot so there are always train themes there. Jackson enjoyed scarfing the cake as well as looking at it.

We didn't stay for the meeting, though. August is the big membership meeting where they elect the board of directors. We figured we'd better scoot outta there, to be sure we didn't somehow get elected again. Heh, just kidding. I may want to be on the board again someday. Not any time soon. But maybe someday. It is a lot of work, and it is really easy to get burned out. But I do miss Sam Bass and hope to do a show there again in the next year or so, after I am all clear of the cancer.

Last night we had a small Willow viewing on the new TV. Elaine got Willow on Netflix and brought it over and Cliff, Mary Ellen and their daughter, Jen, came for dinner and we watched the movie. It is still a good movie, almost 20 years later. Sigh. Makes me feel old to think this movie is almost 20 years old. Watching it with a 16-year-old who had never seen it was fun. And it was good to see Val Kilmer in a movie again. What's he been doing lately? Anything? I understand he is difficult to work with, so is that why he doesn't have a big career anymore? Hmm.

Today had a few issues. Jackson had a few inconsolable fits throughout the day. The first one was solved by a mid-morning bath. He was upset about not being allowed to write with a pen on the new TV. I was proud that when David caught him about to do so, he didn't yell as if the sky was falling. He simply reacted quickly, removed the sharp writing implement from the vicinity of the perfect, shiny, gorgeous, new consumer product in our living room.

Poor Jackson couldn't deal with the pen's removal and began crying as if his broken heart would never mend. I picked him up to console him after it was clear he wasn't just gonna get over it and move on and he told me 'get in tub with me.' Which is his thing lately. He doesn't want to bathe in his own tub anymore, he wants in 'mama's tub'. The deep one. I guess I don't blame him. Faced with the option of his standard small tub or my nice garden tub, I'd choose mine too. Except, my tub is supposed to come with me in it.

Since I have been sick and taking baths for comfort sometimes in the daytime, he discovered that he loves to get in the tub with me. And nearly every time he is in our bathroom, he is begging to 'get in tub with mama.' He goes so far as to start tugging at my clothes telling me to 'take off shirt, mama.' I do get in with him sometimes, but I can usually just hang out with him and put him in alone. Which is what I did this morning. He wanted in the tub with his toys and his balloon. He was so cute, I had to get a picture and I even managed to get one with all his bitsy parts covered so I don't get arrested for posting it. Um, can I get arrested for posting this pic do you think? Hmm. Hope not.

Jackson's other major fit of the day had no reason. He woke up from his nap crying and didn't want David to take him out of his crib. He just sat in his room in his crib crying for about 45 minutes. I was attempting to nap at the time, but I heard David offer him toys, juice, snack, everything he could think of. But the boy just wanted to cry in his crib. Don't know why. He finally decided to come out. He needed to choose a complete new set of clothes than what he was wearing. David said the clothing change was part of his healing process. OK.

He also needed about an hour or more of Choo Choo Soul to recover. Ah, Choo Choo Soul. I love you and curse you at the same time. For those of you who are not frequent Playhouse Disney watchers, Choo Choo Soul is a mini show that comes on in the mornings. It is a train-themed music video. Different child-centered songs sung in a funky, urban, hip-hoppy style. It is pretty good stuff if you don't have to hear it five hundred times.

See, I made the mistake of finding it online and playing a few of the videos for Jackson on my computer. I only did it because he was forcing me to sing the song. Jackson brought me his toy train the other day and said 'choo choo' like they say in the opening of Choo Choo Soul. So I sang a few bars of the opening and he laughed and when I stopped singing it he got mad and whined until I sang it again. And after ten minutes of being forced to sing 'All aboard the choo choo train, all aboard the choo choo train', I grew weary and figured there had to be something online.

And there is. And Jackson is hooked. He wants to sit in my computer chair and watch the choo choo videos over and over and over and over. I can't even check my email anymore without him standing next to me calling for 'choo choo'. So for those of you who babysit Jackson, you are going to need this link. We are trying to teach him to use the mouse so we don't have to keep starting the videos for him. It will be much easier when he can click on the video himself.

David's folks came for dinner tonight and we had a good visit as usual. They were in town shopping and wanted to do dinner with us, so they went to HEB and bought one of their rotisserie chickens and stuff to go with it and brought it over. Jackson enjoyed the attention and even got a new shirt- which he insisted on wearing right away. "Take tag off, mama." He said as he tried tugging the price tag off. My son is a clothes horse. What can I say?

He was up a little late tonight and discovered the moon. We were all sitting out on the back porch and the moon is particularly bright and visible tonight. He thought it was pretty and even said 'night night' to it before heading to bed. I should get a copy of that book. Goodnight Moon, is it? I think it is a staple of children's libraries and we should have a copy. Especially since he likes the moon.

**Warning, the following paragraph contains TMI regarding my scalp sores**

So my head sores are not getting better. In fact they are very angry and red and throbby and oozy. And now I have soreness that runs from one of them all the way down the side of my head behind my ear and into my neck. Which kind of freaked me out. Probably because traveling soreness generally equals infection. And apparently my system has little defense and infection, even of the equivalent of infected pimples, is a big deal. I was worried, so I called Mom who agreed yes, this is bad.

So I called the cancer center and had the doctor on call paged to call me back. Luckily, it was my own Oncologist who was on call for the weekend and he called me back right away. I explained about the scalp sores and the nastiness and pain and he called in an antibiotic to the pharmacy for me. He said that this stuff can get out of hand and make a cancer patient sick pretty easily and if it doesn't improve in the next day or so, he wants to see me. If the oral antibiotics don't work, I might have to get IV antibiotics.

After I talked to him, I noticed that one of the scars on my chest from getting my port was pretty sore too. I poked at it a little and damned if it isn't a little oozy too. Man, that scar is a month old it should be healed by now. That is pretty scary. Makes me think the infection in my scalp is traveling down my neck and now is in my higher port scar. I hope these antibiotics knock it out pretty quickly. I'd rather not have to go in for IV drugs. Course, I'd rather not end up sick with a systemic infection either, so I'll do what I have to do. Sigh. This is supposed to be my feel-good week. WTF?

Friday, August 24, 2007

I managed to make it to work today with Jackson. The bone pain is on the downswing, and though I had problems sitting in the office chair for too long, it was a good day. I was able to put on the calendar a good estimate of when I can and can't work for the next month or so. And I expect the pattern to be somewhat consistent till the end of the year; one full week out of every three with another couple of Mondays and Fridays thrown in on chemo/bone pain weeks. It is a three week cycle.

I can't believe how wonderful the Palace gang is about my not being there. It can't be easy for them to be down a person. Especially since part of my job was to man the fort in the afternoons so that Sonja and Mary Ellen don't have to be there all day every day. And I was the afternoon expert. I was in the loop and able to make decisions and answer questions independently. Now when I do work, I am not able to be johnny-on-the-spot as well as BC (before cancer). I just hope that if I am able to predict when I can be there, it will make it easier on them. There are a couple of guys that taught this summer in the workshops that Mary Ellen and Elizabeth have been orienting to take some of the shifts that we know I can't work. Of course I hope they do just well enough to make things easier on the staff and volunteers, but bad enough that when I am better in a few months, Sonja kicks them out and welcomes me back with a 'thank heavens you're back...' Ok. I don't mean that. Not really.

I haven't written that much about Jackson lately and I must remedy that. He is really getting to be a little boy. It is interesting to talk to him now and try to draw him into the two-year-old version of a conversation. On the way to work today I told him we were going to pick up some chicken strips for lunch. I used to tell him our plans when he was a baby too, but there is just something cool when the baby answers back with 'chicken good'. I suppose that will lose its shine when he starts saying 'but I don't wannntt chickennn, I wannt McDonald's'. But for now I like it. He often declares food 'good'. When he tries something new, tonight it was pineapple in my stirfry, he either spits it out or eats it and declares 'pineapple good, more pineapple peeezze.'

Each morning, Jackson has to chose his outfit for the day. You are not allowed to chose, he has to do it. I hold him up to the closet while he sifts through the shirts hanging there till he decides on one. He favors bright colors and decals of cars, trucks or building equipment. And fish. I generally get to choose the pants from the drawer. Or at least I pick a couple of things and say 'this one?' 'Nooooo' headshake headshake. 'How bout this one?' 'Ok'.

And shoes. Shoes must be chosen too, several times a day if while wearing one pair he spots another pair he'd like to wear instead. He loves shoes. Too big, or too small it doesn't matter. My mother-in-law, the bringer of all clothing items for Jackson, buys shoes whenever she sees a good deal. Often she gets pairs in bigger sizes for later. And this child has a lot of shoes, boots and sandals. Lots. The problem is that he doesn't care if the particular pair of navy blue sneakers was purchased for an older Jackson. He wants to wear them now. I tell him 'these shoes are too big for you' and he takes it to mean they are special somehow. He always reaches for this particular pair of at least two-sizes-too-large shoes with reverence and in a voice full of awe, he says 'shooze are biiiggg.' I have had to start putting the new, too-big shoes Susanne brings up in the top of his closet because he will insist on wearing them and clomp around the house tripping all over himself in his special 'biiggg shooooze' with no regard for his safety. He loves shoes.

Except for the ones that light up. You know how a lot of kids sneakers have lights on them that blink when they walk? Well Jackson will have nothing to do with shoes that light up. He doesn't even want them near him. They freak him out somehow, as if there were something unnatural and frightening about lights coming from your shoes on impact. I dunno. He has firm ideas on such things. Stuffed animals, toys that talk, and light up shoes are anathema to the boy. Gotta respect a kid who says 'I think that's weird and I'll have nothing to do with it.'

Jackson has also decided he doesn't much want to sit in his high chair anymore. We got out of the habit of using it when I got sick. Staying at my Mom's house or having help with him here at our house things were just different. Whoever fed him would feed him on the run or in the living room or whatnot. Things were chaotic. And though I can get him to sit there for lunch sometimes now, he has decided that he wants to sit at the table in a chair like the rest of us. Mom got out a few phone books for him to sit on and he seems pretty happy to sit at the table for dinner. David's folk use a high chair at their place that just rolls up to the table so I guess he got to like it there. Whatever the reason, we may need to invest in one of those little booster seats so I don't have to worry about him sliding off the phone books at the table. But I am ok with that. He is so cute sitting at the table like a little boy.

Um, what else? How about a baldness update? I am very nearly totally bald now. All the tiny hairs that remained from my buzz cut are falling out rapidly. I have had two showers today to get all the the spiky little hairs off my neck and shoulders. I will be glad when they are all gone and I don't look so patchy.

Of course there are the scalp sores. Yup, definitely another unfair indignity and blow to the memory of my former glorious head of hair. Hair all gone. Have head acne. Great. I googled around this morning trying to find out if other chemo patients have had this happen. I did find some articles that lead me to believe that Rituxan may have something to do with it. Called it a follicular rash. And the few pictures I saw of severe cases made me grateful to own my few sores instead. Severe cases involve the scalp and face and it was not pretty. So ugly that perhaps I don't really have this from a drug reaction, just a few irritated hair follicles. Either way, I now know how bad it could be and am happy it isn't. But still. Head sores? Come on.

But a head wrap or wig covers it up and I can ignore it for the most part. Heh, today at the drive through at Golden Chick, the young lady at the window gave me my order and said, "I really like your hair, ma'am." And with a slight movie star head shake I replied, "Why thank you." I had nice hair before - soft and shiny - but I have never had body. And boy does my wig have body. It is the envy of drive-thru-window gals everywhere.

Guess that is all for tonight. Oh, if you knew or knew of Jim Prior who left us this week, skip on over to his wife's blog and read the tribute Brandon Harris wrote to his teacher. Made me cry. Thanks to Jim for Brandon and the many other theatre students he mentored over the years. RIP.
Last week on my birthday, David and I had an impromptu dinner at Outback with a couple of good friends, Leslie and Chris. At the last minute I had made the decision to go out to eat and see who wanted to come. It was my birthday and I was anxious because the next day was round two of chemo. I needed a night out.

Chris and Leslie were free and braved the traffic after work to meet us. We had such a good time. Great food of course, and our waitress was awesome, treating us more as friends than just another table. Maybe it was because it was my birthday, or maybe it was the telltale cancer headwrap, or perhaps it was just because we were a group of friends; happy people, having a good time.

We ate far too much and just had a blast catching up, talking about books and starting a new book club and the crazy paradigm shift that has occurred this summer making Kevin Federline seem like a stand up guy and good dad. Ok, It was Chris and I who talked Britney trash and laughed about how her behavior has made Kevin look good. David and Leslie humored us kindly. The staff sang me the loud happy birthday song and although I knew I had an appointment with poison the next morning, for that evening I forgot about it and just enjoyed myself.

Several days later I received a package in the mail from Chris. He had come to the dinner not knowing it was my birthday and decided to send me a gift, though it was not necessary. Especially since he and Leslie treated us to dinner. (We invited them to dinner and they picked up the bill. Who has friends like this?) In the package was a particular book that Chris had discussed with us and that I thought sounded great. He sent me a copy and I was very happy to get it and told him so.

I finished the series of books I had been reading a few nights ago and picked up this book to start it. When I opened it, I realized that he had inscribed it in his beautiful handwriting. It says:

For Marsha,
Chemo tomorrow, but tonight only a wonderful dinner out with friends.
Love Chris
August 13, 2007

Chris, I hope you read this and know that I am humbled by your friendship and that I will remember how you helped me know that though chemo might be a day away, I am not alone. Then, now or ever. Thanks for the gift. And the book.

Wednesday, August 22, 2007

I wasn't able to blog yesterday because of the bone pain. I couldn't have sat in this chair long enough to write anything. I didn't do much of anything but spend the time trying in vain to find a comfortable position. Laying down puts too much pressure on my bones, sitting up helps for a minute, til the pressure on my hips is too much and I have to do something else. I understand that the Neulasta is a miracle drug that makes a big difference in the lives of cancer patients. But this bone pain for 36 -48 hours is exhausting.

I have been taking round the clock Tylenol and Motrin and it kind of takes the edge off, but not much. Last night at about 11:30 I had to get out of bed to take some Darvocet and eat something because the Darvocet often makes me sick. And even then it didn't end the pain, just dulled it enough so I could sleep. At its worst, the pain is huge; my bones ache, especially hips, ribs and shoulders, but also my soft tissue feels bruised and I can't be touched. At its best, the pain is a constant annoying throb, centered in my hips, like right now. I try to keep my humor about me, but it sure is getting old. I am tired of hurting after two days. But I know it will soon be past and that is what is keeping me going. Just a few more days and I will be feeling great. For a week. Blech.

I had an appointment today with Dr. Yohe for my yearly girl exam. She was running behind so I had to wait for far too long in the exam room after waiting far too long in the lobby. My mom and I waited probably 40 minutes in the exam room for her to get to us, me in that attractive pink gown I was given to wear. I was really having a hard time sitting because of my painful hips. This office has these exam tables that actually sit up into chairs before and after the exams and it was in the up position so I couldn't lay down. I sat in the chair and waited, then stood up and paced when I couldn't sit anymore. Between the pain and the fact that I was rapidly fading from needing to eat, I was kinda having a rough time. Mom rubbed my back to try to make it easier but I was just about to call it quits, put my clothes back on and go home when the doc finally made an appearance. She really is great, so I am glad I stayed. We talked about chemo and birth control and ovarian function and decided that she would test my hormones to see at what level my ovaries are functioning. This will tell us how crazy we need to be about birth control. If I register as menopausal from the chemo, I keep taking the birth control pill and stop worrying. If I register normal, I keep taking the pill and we worry or add another method to the mix. Chemo may or may not shut off my ovaries, and it may or may not render the pill null and void. This is when that men's pill would come in real handy - do you hear me Pfizer? How about you GlaxoSmithKline? Anybody?

After the appointment we ate fabulous chicken pot pies at KFC (Thanks for the tip Mary Ellen), and I can't tell you how much difference eating makes on the way I feel. I don't often get that stomach-growly hunger, I just start to wilt. And move even slower and feel like passing out. It is sometimes unrecognizable as hunger and by the time I figure out what the problem is I am pretty far gone. Then I eat something and as if by magic, I feel able to go on and deal with a few more hours of the incessant, irritating, tedious, oh-so-sucky bone pain.

Wow, it seems like this is the day of complaining for Marsha. I didn't intend to get on here and complain, but since it seems like that is what is happening can I talk about a little something that has cropped up? Something small, but irritating? It seems that on top of the baldness that has plagued my head, I have developed some kind of pimple thingies. On top of my head. Not sure what they are. Look like bug bites, feel like pimples. Probably irritated hair follicles as my remaining velcro-fuzz is rapidly taking flight from my head and landing like so much dandruff on my arms, neck and clothes. And those little hairs stick to me and itch to high heaven, but I digress from the topic; the topic of head pimples or whatever they are. Must I suffer this indignity? I mean really. WTF?

In other news, David worked from home today and kept Jackson while I was at the doctor. And when I got home he reported that while David worked on important DMI business, Jackson, who has a frequent perch on David's desk, somehow peed on his keyboard and now the 'z' and 'x' keys don't work. And of course David was working on a project called 'zag'. How did this happen? I dunno. But it sure makes me smile to think about it. I should leave Jackson home with Daddy more often.

I have an appointment with my eye doctor tomorrow morning to follow up on my lasik once more. I can tell my eyes are still too dry, but my vision is good. I am still so glad to have gotten my eyes fixed. What a gift it has been.

I am not sure if I will make it back to work tomorrow. I sure would like to but it will all depend on the state of my hips and whether the bone pain allows me to sleep tonight. I wasn't able to drive today, we shall see what tomorrow brings.

Monday, August 20, 2007

I am not sure how to begin this blog today. It has been a full day for sure, but should I rank things in order of importance or start with the mundane and work up to the big stuff? Hmm...I think perhaps since one thing touched everything else today, I should start there.

From reading the blog of a friend of mine and fellow blogger, I learned that early this morning her husband took his own life. The details are sketchy and mostly hearsay so all I know is that he shot himself and died in the ER and she was by his side. I cannot begin to understand the depths of his pain and the horror of what his family must now deal with. I can only say that my thoughts are with her and all those touched by this tragedy.

He was an important man to many of my theatre friends and family, especially to the young people of Round Rock and Sam Bass Theatre, he was a mentor. At work today, there was a hush and a stillness of people coming together to grieve or to simply ask why. I know we probably will never have an answer that will satisfy, but to Ronni, who may read this when she is able, I just want to say how much this truly sucks and I am so sorry you have to live with it.

I had lunch today with my dear friend, Brian who I have not seen in some time. He has been living at ACC the last two years training to be a radiological technician. He graduated this month, top of his class, and had the leisure to meet me and even made me some of his famous pecan bars. Mmmm. Those of you who know Brian's pastries, be jealous, they are just as good as you remember. We had a great visit and Jackson behaved well and scarfed all the IHOP he could eat.

I managed to get a few things done in the office today. I am a bit out of the loop and it is a little hard to know where to start. But I figured out the new credit card machine and entered a stack of reservations and season ticket purchases and felt good doing it.

I do feel like I have developed a case of ADHD. The message boards I have read call it chemo brain. I have a hard time concentrating, I have to read an order three or four times before I get it; my reading comprehension is not what I am used to. And I am easily distracted and have to ask myself all the time, "what was I doing?"
This is not my normal brain function. And other chemo patients tell me that I am not imagining it. So at least I have an excuse - chemo brain.

Right on schedule, my body has begun to ache. It was this time last round that the bone pain started and sure enough, here it is. At least I know what to expect and that I need to start the pain meds now instead of later when I am really hurting. That goes against my nature. I don't like to medicate unless I am really hurting. But I am told that if I get on top of it before it gets too bad, that I may be able to manage it better and with less drugs overall. So I am going to try it. Right now my whole trunk, from my shoulders to my knees feels bruised and tender to the touch. And it's humming. Yup. Humming. My legs are humming, not throbbing, just humming with warmth. Very odd. It is what I like to call 'pre-painful'. A warning. Sigh. We shall see what the night brings and whether I will be going to work tomorrow.

Sunday, August 19, 2007

Ode to Prednisone

Oh, you five orange chalky tablets separated in my pill-by-day box
you taste so bitter going down and like to get stuck where my tonsils used to be
I Can't Believe it's Not Butter, spread thin on both sides makes you much more cooperative...and tasty.

Your side effects are many and varied and quite interesting in nature. My favorite is the hunger that cannot be tamed and quite possibly the 'inappropriate happiness' and 'loss of contact with reality' from which I surely suffer but can't bring myself to care. I do not enjoy the shaking hands and the weakness in the knees, but from the bulging eyes and acne, happily I am spared.

For five days after chemo you are my constant friend as you immunosuppress and beat down the lymphocytes that plague me. I proclaim I can handle the short-term effects of insomnia, euphoria and rarely mania, as long as you keep cancer from taking me.

Prednisone, you are my unwanted hero.

Saturday, August 18, 2007

So food. Yes. Food seems to be the most important thing to my body right now and I can't seem to get enough of it. It is funny really, since I spent the last six months as the frightful, though terribly trendy, skeletal girl, I seem to be making up for it now. People keep telling me I must be the only cancer patient to gain weight while undergoing chemo. But for me this is a good thing. I need the weight and the energy and if I weren't able to keep eating as I need, I could be in dire straights pretty quickly. As it stands I have put on about 5 pounds of needed reserves. The voracious appetite does scare me a little though. I am an American woman, after all. I am trained to look at any rising number on the scale as a personal failure punishable by lashes and ostrasization. But for the five days after chemo, I am able to blame the prednisone for the fact that no amount of food in the world is enough for me. David has threatened to stash food where I can't find it so he and Jackson won't starve. I don't think it will go that far.

But the combination of the appetite increase and the fact that nothing tastes quite right makes it difficult to feel satisfied. I take comfort in the knowledge that in the next week or so, I will even out, eat like a normal person and things will taste as they should.

Friday, August 17, 2007

Hello from the ranks of the terminally slow. My body is back in that 'doesn't want to move' state. "No really," I have to tell it. "I really do want you to stand now and walk. Keep going. That's it."

I woke up this morning with my cheeks kind of swollen and puffy. My mouth has once again been ravaged by the chemo. Could be worse, I read lots of chemo patients have terrible mouth sores and can hardly eat. I just have swollen-raw-mouth and a crazy-intense sour gland function that makes the first several bites or drinks of anything painful. Just get through that though, and it eases enough to make eating possible. Course nothing tastes quite right. But I know that in a few days I will hopefully have some functioning taste buds back.

Today Mary Ellen picked me up and took me for a manicure and pedicure at the nail salon she goes to. My Mom was quite leary of the idea, because I have to be so careful about exposing myself to infection. And I have had pedicures that were a little rough. Even had one sadistic man draw blood on my big toe, he dug so deep. And that was my wedding day. So after consultation with nurse Mom, last night I tended my nails myself. Filed them the way I like and got them ready so all the mani/pedicurist would need to do is a little buffing, some cuticle work and that glorious foot/calf rub they do so well. And a nice paint job.

So I managed to get more than a little bit pampered and still avoid open wounds at the nail salon. Course it was a little difficult to ensure that the gal understood me. English is not her first language, and I am pretty sure she just though I was a high maintainence control freak when we kept trying to explain to her "file only, do not cut." I finally lifted the egde of my sassy new wig and said. "I have cancer, I cannot get an infection." I think she either got the message or just decided I was nutso and let it go. Either way it was a nice treat. Thanks Mary Ellen!

Thursday, August 16, 2007

Got this from The Holmes . I asked for an interview and here are his questions.

1. You may have mentioned it in a previous post, but I can't remember. How did you first catch the acting bug?

As long as I can remember I have wanted to act on stage. I was a shy, tiny child and tended to get lost in the crowd, but I think it was in first grade that I first told a teacher I wanted to have a speaking part in the spring musical extravaganza. They didn't audition the speaking roles that I knew of, they - the big they - just handed them out mostly to the popular outgoing kids. I never had a chance. My teacher told me I was too little and to quiet and I had to sing in the back on the risers in the chorus like the other flunkies. I knew I wanted to do it then, that I could play a part and play it well. Little and quiet be damned. I find often at a party that those who are actors are not always the center of attention; the reality stars; the 'hey, look at me crowd.' The best actors I know are often the ones sitting on the stairs at the party, people watching and taking it all in. Outgoing and popular have nothing to do with acting. Never have, never will.

2. Unless I've been completely misunderstanding both you and your husband all this time, y'all are a pair of wacky liberals residing in a fairly conservative area. Ever any friction with your fellow townspeople?

Growing up liberal in Florence Texas taught me nothing if not that it is fruitless to argue with a conservative, ignorant bubba. They can't be moved by facts, compassion or truths. Moving out of Florence and into the Austin area taught me that you can argue and have real debate with unignorant conservative people. But the novelty of that wears off pretty quickly. I find that I simply am able to surround myself with a circle of friends with similar beliefs and exclude most others.

Neighbors you can do nothing about. I have an across the streetish neighbor I have never met that planted a 'one stick figure man + one stick figure woman = marriage' sign in their front yard for months before bubba voted to change the constitution of Texas to discriminate against gay relationships. I cannot and will not have anything to do with people who have such nasty and public feeling against some of the people I hold most dear. I know as many loving, long-term, legitimate same sex families as I do heterosexual ones. I can't abide that kind of ignorance and fear/hate. But I do tend to keep my mouth shut and not start too many unwinnable, unchanging arguments with people I don't know. Until The Holmes asked me this question and I started spouting off here on my blog. All I have to say to the people across the street is "Not your marriage? Not your Business." The End.

3. Tell me about a movie where you feel that one or more key roles were grossly miscast. Feel free to recast them with the actors of your choice, including yourself.

Hmm. That is a hard one. The only thing that immediately comes to mind might be controversial. But, I think Kirsten Dunst was too old to play Claudia in Interview with The Vampire. She acted the role well enough, but she was too old for the part. She was years younger in the book. And I understand that a younger actress would have had a hard time nailing the role, but I just remember from my personal experience that an older child does not always look her age. Such as me personally. At 10, I would have looked 7. At 9 I could have played 6. I have personal evidence of myself as and example. Hollywood casting could have found a tiny child actress who could play several years younger. A six year old vampire is much more creepy than a 12 year old vampire.

4. Does Jackson have any habits that you're looking forward to him outgrowing? What about David?

Oh yeah. This one is easy. Since it is the same habit for both of them. Daddy has taught baby that flatulence is funny. Anytime gas passes in my household the two of them must acknowledge it, laugh and carry on and now Jackson says "poo poo" and laughs as if he were the first to laugh at a fart. And when Jackson passes gas, he does a priceless little "tada" dance move and looks to the nearest people for their praise, laughter and appreciation. And unfortunately, he usually gets it. Even from me. I can't help it.

5. Whilst out for a stroll one day, you accidentally fall into a timewarp. Could happen to anybody. As you're falling through, a little sign pops up that says "Hullo, this is a timewarp. Do not be alarmed. Please select a historical period to be deposited into." What period do you choose?

I think perhaps 1900ish, but only if I could choose to be well-off or wealthy. No fun going back in time to experience the industrial revolution and the roaring twenties if you are stuck in a poor farmhouse with 6 babies and then the depression hits. Can I be a Vanderbilt?

Wow, that is so shallow. Also, I have cancer so going back to 1900ish would be a death sentence, most likely. So perhaps I should warp to the future when we have the nanotechnology to attack cancer cells only and leave the rest of them alone. Then chemo would not be the poisonous event it currently is. Life-saving poison, but still poison.

For better or worse, those are the answers my chemo-brain hath out spat. If you'd like to be tagged for this one and answer a series of questions written specially for you by me, just follow the instructions below.

Interview rules:
1. Leave me a comment saying “Interview me.”
2. I will respond by emailing you five questions. I get to pick the questions.
3. You will update your blog with a post containing your the answers to the questions.
4. You will include this explanation and an offer to interview someone else in the same post.
5. When others comment asking to be interviewed, you will ask them five questions.

Wednesday, August 15, 2007

I got my wig today and had it cut to suit me. It was pretty poofy out of the box, but Bonnie really thinned it out nicely so it doesn't overpower me. I like it. I am having a hard time getting a picture that does it justice. I think it looks much better in person and tucked behind an ear. But on the picture it looks like I have elf ears and it just doesn't read well in general. So much better in person. But I am posting a couple of the best we could get for your enjoyment. I do like that depending on how I comb it or tuck it behind one or both ears it can look sweet and wholesome or a little bit sexy. I am not sure how much I will wear it, I think I will most likely alternate between head wraps, hats, baldness and wig, depending on the temperature outside and how I feel.

Today was a pretty good day. Felt pretty good except for the atrocious poison saliva thing and I tire out pretty easily. But all in all, it looks like I am going to rebound faster from this round of chemo than I did the first one. I am in much better shape going into it both physically and emotionally. Last night was rough. I felt pretty crappy. But last round when I felt that bad I had a breakdown about hair loss and having cancer in general and cried for an hour. This time I just whined a bit and wished it were over. So this is good. It remains to be seen what the bone pain will be like this time. Better or same, I don't know. Time will tell.

Jackson came home tonight after his 3 day chemo sabbatical with David's folks. They said he behaved very well and didn't throw a whole bunch of fits and went to bed without a fuss and ate plenty. He looked at me for a long time in my new wig before he came and talked to me. He took the first haircut in stride and then the buzzing barely fazed him, but coming home after three days to the new wig in a darker shade than my old hair just was too much. He probably wants to know what the hell gives. Why does he have to deal with Mommy looking different every time he turns around. Geez louise, enough already. But by bedtime he was fine. Wonder what he will think in the morning when I get him out of bed and I am bald again. Poor little guy. Guess I will have to show him the wig and put it on in front of him a few times. Then he will just come to understand that sometimes I am bald, sometimes I wear hats and head wraps and sometimes I wear a hair hat.

I have been drinking water like crazy today to test the theory that being really hydrated will both make me feel better and dilute the poison spit affliction and ya know what? I think it is working. I seem to be having some relief from the nasty taste and it isn't so cloyingly thick. So yes. Hydrate, flush the system, feel better.

But for good measure, my Dad is bringing me a case of Extra sugar free cinnamon gum. This is the perfect flavor for cutting the bad taste. And he had some at his grocery store in Santa Anna, so SCORE! Thanks Dad, you are my hero as usual! i can't wait to spend the next couple of days with you!

I just want to start off by saying, on behalf of all cancer patients out there, that chemotherapy truly sucks ass. Truly. I had a rough evening and night last night. Nauseated and uncomfortable and unable to find much relief from it. The phenergen pills for nausea don't really seem to do much for me. Except give me body spasms so I can't sleep. I lay there in my bed and had to, had to twitch. My arms twitched, my legs twitched, my neck too. I finally got up and twitched on the recliner for a bit, watched some infomercials and had a bowl of cereal. This was at about 1:00 this morning. I understand that the really expensive drugs that I am on, such as the Emend, have made chemo so much more bearable for many, many people. I felt queasy, car sick and on the verge of throwing up for hours. But I didn't spend 6 hours actually throwing up, thus forcing me into the ER for dehydration. So I shouldn't complain. But I can't be Miss Sunshine all the time. I spent the last week feeling so great and overcoming a huge blow to my self image - shaving my head - and it just really sucks to have to go back to being cancer girl.

Enough of that though, because I am feeling much better this morning. Weak and shaky and slow as molasses. But ok. I was much healthier going into this round, and I didn't have outpatient surgery the day before and the day after. So I am optimistic that after one night of chemo sickness, I can feel ok, but slow, until the Neulasta shot comes after me next week with the bone pain.

Chemo yesterday was once again pleasant. Andrea' came and got me at 8:30 and we met my Mom at the Cancer Center in Georgetown. I took up the same back corner I had last time. I like it back there. Plenty of room and I can survey the whole room while I get my infusion. It is a bit far to get to the bathroom from back there, though. And when they are pumping bag after bag of liquid into your veins, you have to get up and shuffle to the bathroom with your IV pole at least every 40 minutes or so. That was Mom's job. She would unplug me from the wall and walk me and my pole to the bathroom. Help me out a little in there and walk me and my shadow back to my seat. I wonder if the nurses steered me toward that spot on purpose because I am young and have my Mom with me. The infusion circle closest to the bathroom and nurses station gets filled with the elderly. I bet they want to keep those patients closer in case they need help. Makes sense to me. I can yell louder, get out of the chair by myself and have my own private nurse. Works for me, I like having my own corner. Though I think it would be nice to have another younger patient around. The other patients I see are nearly all at least 50ish, but even they are outnumbered by the elderly.

The infusion took a little more than half the time the last one did because they were able to infuse at a higher rate. The first time they take it really slow and check your blood pressure after 50cc's infuse and then increase the rate by increments of 50. This time they checked me after each 100cc's and increased the rate by 100.

First drug was again the Benadryl and Pepcid. And I was so high from it once again. It is only a little bit enjoyable to get high before they give you the chemo drugs. I told my nurse Jennifer that it must be their evil plan. Get us nice and high first then we won't complain so much about the chemo itself. She just kind of gave me a "you're so high" sort of a look and smiled. It is only fun til half the bag has been infused. Then I can't stand it. First half of the bag is "Woo woo! Party at the frat house!" The second half of the bag is freshman hazing at the frat house. "Please no more, I'm gonna be sick!" "You must finish the beer bong or you can't be in our club. Ah Ha Ha Ha Haaaaaa!" Ok. Sorry. You get the picture. Here is Jennifer administering the red chemo drug. It has to be hand infused and not drip from a bag. Not sure why. Next time I will ask.

After about an hour, the over-high wore off and I could really taste the awful poison of chemo being excreted into my saliva. You take saliva for granted. An invisible moist little friend who helps keep your mouth wet and helps break down food and is just a nice silent companion through life...until you run six bags of poison into your veins and choke him to death. I don't really feel my saliva build in my mouth unless I smell someone else's microwave popcorn or someone says 'cheesecake'. But the chemo drugs enter all cells in your body and when you make more saliva and it pours into you mouth as usual, you taste it. The most awful taste that is really hard to describe. And you can't get away from it. It is always there. It wears off a bit until you create more saliva and the taste renews itself with each wash of spit that enters your mouth. It really sucks.

And everything I eat and drink tastes funny. Gone bad. Food retains some remnant of what it is supposed to taste like, but most liquids just taste plain gross. Water is salty and I feel like I am tasting every mineral dissolved in it. Blech. Everything tastes really salty. Not sure why, but salty seems to be the overwhelming taste. I wonder if the chemo kills or warps your sweet taste buds and your salty and bitter taste buds survive the onslaught. Hmmm. Interesting question. I do find that chewing gum helps. Extra brand Cinnamon flavor does the best job. And wouldn't you know it? That is the hardest flavor to find. The Walgreen's by my house has at least 8 flavors of Extra both individual packs and in multi packs. But no Cinnamon. And I only have two sticks left! Must...find...Extra Cinnamon...gum...

For my birthday on Monday, my adoring husband bought me a very special gift; a pair of beautiful and classy earrings in my birthstone, Peridot. A very pretty light green color. One problem, however. I don't have pierced ears. Never have. I mentioned, after Andrea' shaved my head, that I should just get them pierced because I need some kind of adornment near my face and another way to feel pretty. Weellll, David heard me say that and the sweety called my bluff! When I opened the box and saw the earrings, something must have shown on my face because he was convinced I hated the gift. I so do not hate the gift. I love it. I love it that he heard me say something and acted on it. I love that he chose a pair of gorgeous earrings that are the perfect size and shape and color. That man has really excellent taste in clothing and jewelry, he seems to know what will look good on me and he doesn't hesitate to tell me something isn't flattering. I take him with me when I need to shop for an occasion dress. He is a lot of help. But I digress as usual. Where was I? Oh yes, earrings, no holes to put them in.

While we were at chemo, Andrea', Mom and I discussed the prospect. Is it safe for me to get them pierced while I have a compromised immune system and am not healing very quickly since my body is busy with other things? If it is ok, where to go. Certainly the 16 year old at the mall kiosk is not the appropriate practitioner for a cancer patient. Jennifer, my nurse, didn't object to me getting it done, so long as we can keep it clean and keep an eye out for infection. I think the fact that my mom is a nurse and is watching me like a hawk is in my favor. So Andrea' got out a Georgetown phone book to search for a place nearby that pierced ears. Turns out that Merle Norman on Leander Road, a mere mile from the Cancer Center, does ear piercing and seemed much better than going to the mall.

When my chemo infusion was done, we headed right over and just did it. I picked out a cute pair of CZ piercing studs and volunteered for a little more pain. Grrrrr! I can take it. Bring on the pain. I feel like I could be a sideshow act at the circus. "Step right up, one and all! See miraculous Cancer Girl withstand round after round of emotional and physical beating and never once cry Uncllllleeee!

It hurt a little but not much. Heh. What is ear piercing after Neulasta shot bone pain and natural childbirth - the two most painful things I have ever endured. So it is done. I can wear my new pretty Peridot earrings in about 4 to 6 weeks when my ears heal enough to take out the piercing studs.

People always want to know why I never pierced them before and it is an answer that always makes me laugh. I laugh because it is such a strong statement of who I was as a teenager. I was not allowed to get my ears pierced till I was 14 because that is when my older sister got it done and my folks wanted to be fair about it. At the time I was 9 years old and really wanted it done, but was secretly pleased I had an out because I was a bit afraid of the pain. And when I was 14 and was allowed to get it done whenever I wanted, I had turned into a kid that just had to be different. I was cynical and a smart ass. That came from being such a smart kid in a small town. I felt like I was smarter and more worldly than my peers, which may or may not be true. And I was tiny. At 14 I could have passed for 10 or 11. That didn't help. So whenever anyone asked me if I wanted to get my ears pierced I would scoff at them haughtily. "Hmph, why would I want to do that? I don't need any more holes in my head." Or "Why? So I can wear cute little pink fuzzy earrings to match my cute little fuzzy sweater? Who do you think I am?" I was Marsha Kysor. I wore clothing only in three colors - black, white and red. Red lipstick, pale base. Combat boots. I was making a profound statement and unpierced ears was a crucial part of my overall statement that I was different, special.

Well, now dammit, I am bald and sickish, different and special. The statement has changed a bit. I am now the almighty Cancer Girl and a bald head can't stop me from feeling pretty. I want to wear bright colors and yellow polka dotted sandals and wear pretty sparkly earrings. So be it. Thank you, David for calling my bluff and wielding the death blow to the cynical outsider teenager inside me. (I may still be sarcastic and cynical, but I at least have better reasons.)

Sunday, August 12, 2007

I bought 4 new pair of shoes yesterday. But I got them at Payless for $47 so you can't really say I went overboard. I haven't bought more than one or two pair of shoes since two summers ago. I was due for a style upgrade. And they were way on sale. I sound like such a suburbanite. Me and my shoe purchases. Oh well. At least I didn't mortgage the house for them.

Andrea' spent the whole day with me yesterday. She was an instigator at the shoe store, of course. She was with me when I took David's costume back to Ramona's. It was way overdue - his show closed July 2nd - but she didn't give us any trouble. I think she was very happy to see me and that I am really OK. Such a great lady. Andrea' had never been to her costume shop and was blown away at the sheer bulk of costumes and variety she has available. It isn't a shop, it is a warehouse of fun. Ramona gave me a special gift while I was there. She doesn't like people to know just how kind and generous she is, and as usual when she does something nice for me, she told me not to tell anyone. So I can't tell you what exactly she gave me, but suffice it to say it is an amazing gift that I will enjoy on many occasions to come. It is nice to have good friends. I have really been shown just how many good friends I have in the last month. It is awesome.

Today we had a few people over to celebrate my, David's and Elaine's birthdays. Everyone is sure impressed with our new TV. I see TV envy forming in a few minds. Just like me, they might go home and covet, covet, covet until such a purchase becomes necessary. Heh. I expect the price of these TV's to drop a lot in the upcoming months and in a year we will probably cry at how much less they are than they are today. But that is OK. Happy birthday to me.

My in-laws once again bought me way too much for my birthday. Tons of new tops, bath stuff, a new purse, a nice, big salad bowl and tongs. Elaine got me a Mary Kay gift certificate and some cool retro books and Mary Ellen & Cliff gave me a gorgeous cram and black strapless dress and a bag to go with it. I am so spoiled lately. I'll soon have a whole new wardrobe to go along with my new shoes.

I did sport one of my new head wraps today. I don't mind running around bald at home, but it is nice to have something to wear when I don't want to. I have to get a few more. Everyone says my head looks good. That not everyone can pull off the bald look. Course I never really asked for it. Never said, 'Hey, I think I would look as good as Natalie Portman bald, I think I'll shave my head.' But it is nice to see the sincerity in my friends when they say I look great bald. Since I don't have a choice in the matter, I guess it is a perk to have a nice, round head...which my husband can't stop petting. He asked me if I mind. I don't. He can pet my head if he wants to. The rest of you had better ask first, though. My head is like a pregnant lady's belly - it calls to you to touch it, but you'd better think twice before reaching out. Reminds me of the line from Steel Magnolias, "Reach out to Ouiser and you'll pull back a bloody stump." Heh.

Jackson went home with David's folks for a few days. Tomorrow is my birthday and David and I will probably go see a movie or something. It is my last day of feel-goodedness for at least a week, maybe two. So I want to enjoy it. Tuesday morning at 9:00 I get my second infusion of chemo. Sigh. I at least know what to expect a little. But maybe not. The doc told me that each round can be different. I may react differently. Maybe better, maybe worse. I just gotta take it one day at a time. I feel like the hardest part is over. My hair is gone. The big procedures are done for a while. Hopefully I can get into a routine and before we know it, I will be done.

I suppose it is bedtime now. And I can sleep in a little without the little boy to wake me up. I miss him already, even though he has been a handful the last few days. He is getting his two-year molars and he becomes so unreasonable at times. Motrin seems to help and I sent plenty with Omi, so hopefully he doesn't cause them too much stress. He will come home on Wednesday. I will miss him.

He helped us open presents today. He recognized them for what they were when they came in the door, his birthday being not so long ago. "Presents!" He cried when he saw them. He must have been sure there were all kinds of new toys in those gift bags. Alas, there were only tops and other uninteresting things. But he enjoyed the bags as you can see from the pics.

Ok. Bedtime. Only an hour til I am 31. Do I have to claim it? Can't I just say I'm 29 again?

Friday, August 10, 2007

Big day. Big day. Went wig shopping with Andrea'. I had a noon appointment with the twice recommended Bonnie at Pat Painter's Wig Salon on Burnet Road. We tried on several wigs in different colors and styles. I chose a short bob, kind of like my haircut, but with bangs, in a dark chocolate color. Not quite black, but almost. I love the pic of me and Andrea' posing in blond wigs. I love that the wig I wore comes standard with black roots. Nice. The other was a nice black shaggy wig. But we decided to get a shorter one to make it easier to take care of. My wig will be here on Tuesday and then we can make an appointment to get my wig cut and styled and thinned out. I learned that wigs come with 10 to 30% more hair than they need. You are supposed to get them cut while wearing them. So that is the plan. I also bought a few pretty head wrap scarfy things. I didn't post a pic of the wig I bought. You will just have to wait till it comes in and gets cut for me. I thought a surprise would be nice.

But in the hubbub of trying on wigs and messing and pulling and tugging on my hair, I noticed that my hairline had receded a ragged inch or so. I really lost a lot of hair today. And when I got home I continued to fuss with it and worry it and confirmed that I could easily pull out almost hunks of it. And my scalp felt funny. Kind of itchy and a little painful when I touched my hair. I decided I couldn't handle another shower like the one I had yesterday where I watched my hair run down the drain. The plan had been to let Bonnie shave my head next week when my wig came in. But I didn't like the panicked feeling and the helplessness of it all.

So I called Andrea' and talked to her about it. She and I decided to just do it and she came right over. She was scheduled to leave town at 7:00 with her friend Melissa, but she had Melissa meet her at my house and they would leave from here. Thanks to these ladies for changing their plans a bit to accommodate an impromptu head shave.

It was hard. Really hard. She asked me if I was ready and I said no. I wasn't ready. But when would I ever be ready? Never. You are never ready to be forced into such a decision. Do you want to lose your hair tonight all at once or gradually over the next week or so? Hmmm. Isn't there another option? Apparently not. So I cried and Andrea' cried and David looked distraught and took a few pictures. The cat played with the hair as it fell to the floor and Jackson played obliviously nearby. He came over from time to time to watch and didn't seem at all disturbed to see my hair being removed from my head. I am glad he got to see it happen, so I didn't just surprise him with it. He doesn't seem to care at all. And David has been wonderful. He says I look really cute and have a perfect round head. I think he really means it. He thinks I look cute. Good man, good man.

I am debating on whether to post any of the head shaving pics. I still feel a little raw from the experience. But perhaps I should just do it and get it over with. The world will have to see me like this for the foreseeable future. So I may as well take that plunge and post an unflattering picture of me with a Mohawk.

Me...with a Mohawk. Is there anything more surreal than that?

The TV is here and boy is it beautiful. I feel so indulgent and spoiled, but I think I will get over that really quickly.

We picked up the TV without much trouble at EGL near the airport. Had to get past a security gate and back the car up a long ramp to the huge warehouse. While we waited for the guys to bring out the TV, we watched the men working to unload one of the many trucks that were there. They drove around on these orange forklift/go cart things. And they were hauling booty! The floor was slick and shiny concrete and the merchandise was arranged in numbered rows with enough room for these little forklift cars to maneuver in between them. And the men were tearing around corners and spinning out and honking at each other and flashing their lights and just generally being not careful and driving way too fast. And the cars themselves were beat to shit. The paint on them scratched off and dented. But when they drove by us, I could tell by their faces just how much fun they were having. Driving with what seemed to me to be just enough control not to damage anything is probably the perk of the job that keeps them coming back everyday. Not a bad perk if the little boy inside you never got enough of the bumper cars at the carnival.

Luckily when they drove our TV over, the driver was smart enough to drive slowly and carefully. You don't come tearing out with a customer's new TV on board. It arrived undamaged and safe.

We stopped at Target on the way home and bought the TV stand we had been looking at online. Initially, we were upset because we thought it was $30 more in the store. The tag on the shelf said so. But the dates on the tag said price valid 1/6 - 2/11. David saw a tag lying on the floor nearby and picked it up. Sure enough, it was the real tag with the Sale price one it valid for a few more days. We managed to get the TV stand packed in Mom's Santa Fe, next to the TV with maybe an inch to spare.

My sister, Jen, was a huge help in getting things set up and put together. She also helped me go through my dozens of VHS tapes and make a Half-Price Books box. She is good at getting rid of things. I need a little help in that regard from time to time.

When the TV was all set up, David put on my favorite Dave Matthews concert DVD; the 2003 concert in Central Park. When I took pictures, the camera got perfect still shots of Dave Matthews and the band and one great one of Boyd Tinsley with his back to the camera playing his electric violin. Nice arms that man has.

Oh, in the picture of me standing by the TV, I simply have to tell you that the doll and the unicorn are mine. The stuffed and rubber chickens belong to my husband.

Thursday, August 09, 2007

I just got home from my Grandfather's service. It was really nice. Lots of people came out. Church and community people and family. Good music and a great slide show of pictures from his birth all the way till the present. He left 4 children, 10 grandchildren and 14 great grandchildren.

A Cedar Park Police officer spoke and told a great story about my grandfather. He used to hang out at a local cafe with about 8 or 10 other old guys. They had a table of their own - the liars table it was called. And this police officer frequented the same cafe and got to know the guys and Grandpa in particular. Grandpa had a great sense of humor and loved to give people a hard time, even cops. So this officer used to occasionally leave the cafe a bit before the old guys and he would park and hide near my Grandpa's house. When Grandpa would drive by, this cop would come after him, full lights and sirens. Apparently Grandpa would 'wave', the cop said. But only with one finger. Yup, that is my Grandpa. It was apparent today that there are a great many people who will miss him.

Jackson behaved well during the service. He played with his cars on the floor and enjoyed being around the kids that were there. He even kissed my cousins little baby girl. Very cute. But sometime I will have to teach him not to presumptively kiss girls without their permission. He did very well though. Except for one thing. When the preacher said Jesus Christ during a scripture reading, Jackson, who sat on the edge of the stage, began to repeat it. "Jesus Christ" quite clearly in is sweet little voice. You see, two weeks ago my Father taught him to say that while we were driving in traffic. Except it wasn't a prayer it was an explicative. Dad said it as he drove, Jackson repeated it over and over in the back seat. And today when the pastor said it, his little face perked up. "Hey, I know that word, I can say that!" And he did. At least 4 times. Those of us in the front row had been lightly weeping, and suddenly we were laughing hysterically. Luckily sobbing and laughing so hard you cry looks very similar. Even my Grandmother couldn't help but laugh. My Father, who sat next to me, was very proud. "I taught him that!" He proclaimed with joy. There you go. My heathen two-year-old offers comic relief at a funeral. Not a moment we are likely to forget. And I think my Grandfather, who cursed like a sailor and loved a good joke, would have approved.

Yesterday went well. I felt great and had energy. I had my heart scan at 10, so Jackson and I headed out about 9:30 to meet my Mom at the Cancer Center. Jackson was being cranky. Wanted to wear a pair of shoes that are now too small for him and nothing else would do. I couldn't let him have his way on this one so we had a cranky fit and had to be dragged to the car unwillingly. He got over it on the drive, though, when I bought him a McDonald's hash brown. He loves them.

The cancer center has a nice, big lobby with couches for seating and a large aquarium with lots of fish. Jackson has been there 3 or 4 times already and loves to stand in front of the fish tank and watch them. They also have a big box with books and crayons and coloring books for kids to play with. My Mom stayed with him while I went in for my scan.

The scan is called a MUGA Scan. The took blood from my arm, mixed it with radioactive material, let it sit for 20 minutes and then injected it back into my IV. The radioactive material shows up on the scanner, that didn't look much different to me than the CT scanner. Except it had a flat 'camera' attachment that they focused on my heart. I had to lay still for 10 or 15 minutes while they took pictures, or it may be a video, I am not sure. The radioactive junk made me kind of woozy so, though I asked a lot of questions, I can't quite remember all the answers. I did gather that these pictures (or video) was focused on my left ventricle and was measuring...something. And this 'something' it measured gives them an idea of how Strong my heart is. Can it withstand chemo, is there any damage now we need to know about, etc. Here is a website for the curious, (Um, if anyone knows how to make a link on blogspot and wants to let me know, I would appreciate it.)

I just got a phone call from my Cancer Center nurse, Jennifer. She said the results show that my heart is functioning normally so all is well.

After the scan, we got lunch and and sat at San Gabriel Park to eat and let Jackson play. He loves to watch the river flowing and he always has fun with TT. This is his new name for my Mom's partner. My Mom is Grammy B and Tonya is Grammy T. But Jackson has decided that she is TT. He and TT have a grand time together. He gets a great big grin on his face whenever he sees her. It makes me happy to watch how much they love each other. It is very sweet.

After lunch Jackson and I headed to the Theatre for work. It was nice to get there and get Jackson in his bed. He was happy to go. I asked him if he was ready to nap and he trotted to the handicapped bathroom, helped me turn on the fan and lifted his arms to me to be put in the Pack & Play. He layed down, head on his hands, and said "Night night Mommy."

I got several things done at work that needed to be done. Got the scrips and music scores from 1776 packed up and ready for UPS to pick them up. The show closed on July 1st and we hadn't sent them back to MTI. They probably want their scripts back and are probably all ready to send us a great big bill for them. But since I got sick, and the theatre got so busy with a hit show and full enrollment summer camp, little things like this got missed. That is usually my job. I get licenses and order scripts and ship things back. And it was good to do my job and get some things done.

My sister, Jenni, came into town last night for Grandpa's service and is staying with me. We stayed up too late watching clips on You Tube. I don't get to spend much time with her and we had a good time.

And right now, David and I are about to leave in my Mother's Santa Fe to pick up our shiny new TV! It arrived in Austin this morning and the tracking website said it wouldn't be delivered till Monday. So I called them and asked if we can come get it and they said come on down. They are near the airport and send & receive freight 24/7 so we can come anytime - literally- and pick it up. Yay! I would much rather they deliver it, but picking it up is better than waiting till Monday. I have chemo on Tuesday and want this all set up and settled before then. I know, I am impatient. So sue me.

Tuesday, August 07, 2007

Well, it has been quite a day. Started about 3:00 this morning with Jackson waking me up with a fever. He's been running a little fever for a couple days and when he got me up at 3:00 it was 103.2 and he was not feeling at all well. So I got him up, gave him some Motrin and sat in the recliner watching infomercials for nearly an hour. He started to feel better, cooler to the touch, but didn't want to get back in his bed. He said, "The big bed." Which means my bed. He doesn't actually sleep when we let him in bed with us, just sort of talks and squirms and kicks us. So I was reluctant to let him come to bed with me. But given that it was almost 4am, I gave in. He wasn't too bad, a little kicky, a little talky. And I could tell he was sleepy so after a while I asked if he wanted in his own bed and he agreed. I did manage to go back to sleep, which is not always the case when he wakes me up at night. But 7:30 came really early and I did not want to get up.

Jackson woke up cranky and feverish and high maintenance. Juice must be in this cup, not that cup, I want the purple lid on it, not the green one. I am not very patient about that sort of thing. I know he just wants a little control in his life, especially when he isn't feeling well, but still. It drives me nuts to play the 'figure out what Jackson wants' game. So I gave him his juice and tried to doze on the couch while he watched Sesame Street.

The phone rang about 8:30ish. My Mom was calling to tell me that my Grandfather, her Dad, had passed on last night. This was not unexpected. He was on Hospice care at home, he was not suffering or even aware very much. Not unexpected, and a sort of a relief that he has gone peacefully, but still very sad. He was a good, loving, kind man, and he never passed up an opportunity to tell you he loved you. He will be very missed.

My Grandmother has been caring for him for nearly seven years, since he had a stroke. And now she will have some measure of freedom; freedom to go to church any day of the week she pleases. And she can spend the next years of her life receiving love and care from the rest of us instead of always being the caregiver. We are all anxious for her to have fun and relax.

His service has been set for Thursday at 2pm. Which means that I had to get on the phone and reschedule a doctors appt that I had for Thursday at 2:30. So I got that done. And the carpet cleaners were due at 10:00 this morning. With Grandpa passing, Mom was not going to be able to be at my house at 9:00 to help me as we planned, so I scrambled around getting everything ready. All the toys needed picked up - so many toys, how did we get so many - light furniture moved, etc. And I managed to Tom Sawyer the small boy into helping me pick things up. I was happy to see he is susceptible to that trick now. : )

I have been feeling more than a little desperate and panicked since yesterday afternoon. I ran my fingers through my hair at work and came away with a more than normal amount of hair. Not quite what you would call a clump. But I am shedding. A lot. I repeated the action several times with the same result. Nope, not imagining it. Not psyching myself out. I am shedding. My hair has begun its revolt against the chemo, and it made me feel out of control and desperate. Desperate to get it cut. My dearest friends have been trying to get a little hair party set up at a local salon, but there have been delays. Phone tag, different schedules and what not. If my hair had not started to thin, I would have gladly waited until my girlfriends could join me and have a cool little send-off for my hair. But with the shedding and this hollow achy feeling in my gut, I simply couldn't wait. My hair is long, well, was long. And it was catching on things and leaving hairs. My arms were starting to be tangled with loose hairs and I simply could not let it continue and keep control of my emotions about it. So I got on the phone and explained to the ladies that while I would have loved the party, it is too late. If I had let it go and done it last week, the party would have worked. But I just had to do it today.

So at 1:30 Mary Ellen took me to her stylist and friend Mary Pelton, the owner of Envy Salon in old town Round Rock. Mary is a cancer survivor and got me in immediately. I was having a hard time before we left the house. I was trying not to give in and sob, but I intermittently lost it. So we took my box of Kleenex with me and headed to the salon. Mary gave me a big hug before we started and told me to remember to look in the mirror every day and tell myself that with or without hair, inside and out, I am beautiful. She spoke like a woman who knows and we all cried a little bit together. Then Mary put my hair in a ponytail holder to cut in one swoop for Locks of Love. I had enough length to donate so we decided to do it. I couldn't help but cry as she cut the ponytail off, but only for a minute.

After a shampoo, she began to cut and shape what was left. We decided on a swing bob, sort of like what Katie Holmes just did. As she cut and I watched, I began to feel better. "Hey, this is kinda cute," I thought as it took shape. I started to smile more as it became clear to me that I was actually going to like it. It is cute and bouncy and so different than I have really ever had. I have always worn it long, having neither the inclination nor the courage to cut so much length. But I like it. I really do. I can touch it a little now and not come away with so much hair. I know it is still going to fall out. I know that, but I am going to enjoy this cut till I can't anymore. I may need to cut it shorter in another week as it thins out more. Or I may end up shaving it from here in the near future to keep from being patchy. I think looking at patchy in the mirror would be more painful than looking at bald.

The carpet cleaners, who didn't show up till 12:30, were still at the house when I got back. The carpets look so great, another weight was lifted from me. My mom had made it over to stay with Jackson and help with the cleaners while I got my hair cut. She loved the cut and told me probably 15 times in the next few hours that she thought it was adorable. A-dorable. She confessed that she hadn't wanted to be there when they cut it off cause she would have cried too. But the results are so cute that we both were a little giddy. If I have to lose my hair, better to have had a little haircut adventure beforehand. Jackson looked at me kind of funny when I got home. Just a momentary pause with a head cocked to the side. Then he said his customary greeting, "There'sa mamma," and took it all in stride. I am glad.

To top it all off, today is also my husband's birthday. And I knew from IM'ng him all day that he wasn't having a good day. With Jackson sick in the night, he hadn't slept well. And things at work were hectic. And I think, bottom line, is that David does not enjoy working on his birthday. It makes him unhappy. So in the future, knowing this truth, I will insist upon him taking the day off. He generally does, but I think he was trying to save a vacation day in case he needs it with me being sick. Noble, for sure, but it isn't worth it. He deserves to be happy on his birthday. So I got a hold of Elaine and she and I scooted over to HEB to get a special dinner and cake and ice cream so we could celebrate and cheer him up when he got home. I figured steak and shrimp would be a good way to make him feel loved and special on his birthday. I also bought him a gift certificate for a one hour massage. He deserves that and more.

He is such a great man. When he got home from work he brought in a gift bag for me. He bought me a present on his birthday. He said it was a hair loss present. He was sad for me losing my hair because I was sad. He says I'll be cute no matter what. What a sweetie. He bought me a box of gourmet, hand-made chocolate truffles like he knows I love. I put them in the fridge and will eat them one at a time and make them last a week or two. I love truffles. I would rather have my hair, but truffles are not a bad consolation prize.

Jackson is in bed now, we have all overeaten and gorged on birthday cake and are now winding down from this long day. So many emotions today. Grief and some measure of relief at my Grandfather's passing. Sadness at the beginning of the end of my hair, along with surprise and glee at my cute new cut. Celebration of my husband's birthday and worry at my son's fever. Whew. I should sleep well tonight.

And I hope I do since I have to be at Georgetown Hospital at 9:45 for a heart scan tomorrow morning. Not sure what kind of scan really. Just a pre-scan to look for damage and have something to compare a post-chemo scan to in a few months. I know I won't be sedated, but I will probably have an IV put in my port for some kind of contrast dye. Hopefully it won't take long since I will have Jackson with me. Mom will stay with him in the lobby while I have the procedure. And then it's lunch and off to work at the Theatre and possible wig shopping trip in the evening. It is a good thing this is a feel-good week. Lots and lots to do.

Monday, August 06, 2007

It was a good weekend. I have felt better each day and I can really tell how much one round of chemo has improved my health. I can breath again. I can take deep, long breaths all the way into my lungs and exhale without a single itch, spasm or cough. I didn't realize just how severely restricted my breathing had become. It happened so gradually that we just didn't realize how sick I was. The night before the ER visit that began all this I came home from tech rehearsal and lay in bed with wracking, spasming coughs that lasted for 10 minutes at a time. My breath came in wheezes and fits. How we ever thought this was simply allergies astounds me. You just don't expect that something could be really wrong.

Though, I knew I was struggling. And deep down, perhaps I knew I wasn't well. In the days and weeks before my diagnosis, I remember driving home from work with Jackson and thinking about getting dinner ready and him ready for bed and then getting back in the car for rehearsal and just wanting to cry. "I need help." I would think. "I can't do all this, I am just too tired." I fantasized about moving in with my mom for a few weeks until the show opened. I felt so lazy and so guilty about the house going to shit. Leaving dishes in the sink all the time, letting the carpets get so nasty. Laundry piling up. So many little things left undone. And I felt really bad about it, but could not stop being lazy. I even thought a few times and actually said out loud to my husband "I wish I would just collapse so someone would help me." They'd get TV's Dr. House to figure out why I couldn't stop coughing and things would be great. Heh. Guess I got my wish. I just shake my head now about how bad I let things get before my Mother took charge. I just didn't know I was really sick. I had lost weight and couldn't gain it back and had no energy and couldn't take good care of myself, my house and my son. I took little joy from performing, either in Robin Hood or in getting ready for Steel Magnolias. And still, I just didn't even consider that I was really sick. Just lazy. As much as I wanted to, you just don't ask for help to combat lazy. I felt guilty about it and kept slugging on.

Well no more! I feel good this morning. Better than I have felt in months. I have an appetite and what feels like unrestricted airways for the first time in so long I can't remember. I have put on a few pounds and my face doesn't look so scary thin. Heh, even my bras fit a little better if ya know what I mean. I am amazed at how one round of dangerous, violent, wondrous chemotherapy has already beaten back the cancer that was eating me alive. Wow. The side effects are so debilitating and difficult to deal with. But I get to feel the benefits of the treatment this week. The aches and pains are ignorable right now and I expect this will be a great week for feeling good. Feeling normal. I wonder how much harder this process is on those cancer patients who didn't feel sick at all before treatment. Like a breast cancer patient who felt 100% normal and then found a lump. She has to walk in to her first round of chemo feeling well and leave feeling sick. She only gets to feel the awfulness of chemo and radiation and disfiguring surgery on top of the hair loss. I get to feel the 'wow' of treatment. Wow. I can breath, I can eat, I can play with my son on the floor. Wow. I am getting better.