Wednesday, November 28, 2007

People read this stuff?

Interesting indeed when you find out people other than your friends and family read your blog. I got a letter today from Georgetown Hospital. An apology letter. Seems their Community Relations Coordinator has been made aware of my blog and the numerous billing department complaints I have written about over the summer. You remember, the lab kicked me out then let me back in only to ask for a $25 co-pay for lab services that doesn't exist.

I was just about to sit down to blog about the hour and a half I spent on the phone yesterday trying to figure out why Georgetown Hospital was billing me for $140-something for labwork that Aenta says they can bill me $0 for. Aetna is pretty awesome. They call the billing people for me and 'abracadabra' the mistakes in coding are immediately found and I don't owe the money.

And it isn't just Georgetown. I had to use my mob ties, I mean medical insurance agents to call Austin Radiology and Clinical Pathology too. I am currently sitting on four or five different bills from 3 different entities that are billing me charges that my EOB from Aetna says I should not pay.

My favorite so far was the Bill for the ER doc from October. ER docs bill separately from the hospital. Well they sent me and invoice for $752. Said Aetna denied the claim stating that my insurance was not valid on the date of service. Uh huh. I looked into it and Aetna did not receive a claim from them. So I called and the lady on the phone said, "Oh, looks like we had a wrong ID number for that. We just need to get that from you." I was in the hospital at the time and kinda edgy so I had to speak my mind. "So you have a wrong ID number and you don't call and ask to check the number, you send me a bill for $752?" "We are a call center," she said. "Our phones don't dial out." OK. Their phones don't dial out. So I asked her, "Why then didn't you send me a letter asking to clarify the ID number? An invoice for $752 stating my insurance denied the claim is not the same thing as 'I think we have the wrong ID number." Silence. The poor call center lady didn't know what to say. So I just told her it was really stupid and unnecessary and here is my correct ID number.

I sure wish I didn't have to make all these phone calls. But I do appreciate Georgetown's proactive apology letter. I'm not being sarcastic. I appreciate it. And as I just spent 5 1/2 days in Georgetown Hospital and am too cynical not to expect all kinds of billing issues to come of that, I know who to call to help me fix any problems. And if you are reading this, people in Oklahoma City who do billing for the Capitol Emergency Association here in Texas, I know your phones don't dial out, but I can fax you a copy of Georgetown's apology letter so you know how it is done.

On another topic, namely my health status, I remain unsure. I am still easily tired out and for the past two days have been periodically running a low-grade fever. It hasn't gotten over 100 and my face is not looking worse or infected or anything, but the fever is making me nervous. I really don't want to end up back in the hospital. I see Dr. Franklin tomorrow, the ENT who did the bedside surgery on my face. He can decide if I am healing acceptably or if the fever means I need to go back on antibiotics or not. My fears now are two: I don't want to end up in the hospital again and I don't want to be badly scarred. I fear that my body is going to tire of trying to fill in the hole and is just going to make some skin to cover it up and I am going to have a crater permanently in my face. Maybe a silly worry at this point, but dammitall, I do not deserve to be disfigured. If Dr. Franklin has any worries about how this is healing I want to consult a wound care specialist or a plastic surgeon. I don't care if I have to sell my car to pay for it. Hopefully my insurance would cover it. I know I will have some kind of scar, but I just don't want a permanent hole in my face. So there.

Monday, November 26, 2007

No chemo tomorrow! Yippee!

I had an appointment with my Oncologist today. The results of my CT scan are great. No sign of the cancer. I don't get to be officially in remission till after a PET scan in December, and even perhaps another PET scan three months after that. But a clear CT scan is good news. Not unexpected, but welcome news.

My face is healing slowly. I have a crater in my cheek. A hole. It is yucky for sure. I am supposed to leave it open for some of the day, per Dr, Franklin. When I don't have a band-aid on it, Jackson looks closely at me and points at it. He says "Mamma has a boo boo." Which is really cute and somewhat weird because as far as I know, none of his care-givers have ever referred to a wound as a boo boo. Did he come up with that on his own? From a cartoon? A book someone read to him? We just don't know, but it is sweet.

Jackson is really clingy to me right now. Especially when I am getting dressed and ready to leave the house. My being in the hospital for 5 1/2 days was hard on him. Independent little guy that he is, even he developed some insecurity from me being so sick, followed by a hospital stay. Yesterday morning David got him out of bed and when Jackson didn't see me he said, "Mamma in the hospital?" So heartbreaking to me. Poor guy. David had to bring him in our room to show him I was there. It will get better, I am sure, but it sure is sad to see that my baby has learned to expect me to be sick or gone. 'Mamma sleeping' is a phrase I hear him say far too often.

I am recovering though. I am very slow and my large leg muscles feel atrophied. If I squat down to Jackson's level to see him or zip his coat, I almost need a hand to stand back up. I rousted Jackson last night to help me pick up all his toys from every corner of the living room and after bending and picking up toys and books for ten minutes I was spent. I felt like I had been to the gym for a workout. I guess I just need time to get my stamina, strength and red blood cell levels back. Plus I have a big ol hole in my face that my body is desperately trying to knit skin for.

I wish it would hurry up. I have David's swanky work Christmas party on Saturday and I would rather not go with a band aid on my face. That is a long-shot though and I'd better not get my hopes up. I just won't pose for the nice professional portraits they usually do at the party. Band aid girl doesn't want to be remembered. Course this is part of my life, my story so I may as well commemorate it with a portrait. I should find a nice festive band aid. With holly or Santa on it. Or maybe not.

I asked Dr. George when I could expect my lab values, mostly blood counts, to rebound and be that of a normal, non-chemo-poisoned person. He seemed to think because I am young, that within a month or two I should see much improvement. I am ready to become strong again. I am not ready to start and exercises program yet, but I know I need to move and stretch and start building stamina.

I have about a half inch of hair on my head. I have been ignoring its growth since the third round of chemo, when it sprouted. But it is definitely there. Ladies and gentlemen, we have hair. Nothing I would take out in public yet, but we have progress.

And normally I would be having chemo tomorrow. But I am not. I am done. I don't have to go to chemo this week. Yippee! Of course, if I wasn't done with chemo I would still not be having it tomorrow. Not with this open wound on my face. It is a good thing this happened at the end of treatment, because if it had happened in the middle, it would have delayed chemo, perhaps for a couple of weeks while I healed. I would have hated that. So yippee for no more chemo and yippee for awful infections that happen at the end and not the middle.

Friday, November 23, 2007


I drove to my Dad's yesterday with Jackson. It is a 2 1/2 hour drive, but I was sure I could make it on my own. Packing and loading the car was another issue. My Mom came over Wednesday afternoon to help me. She made it a lot easier and I didn't have to waste any of my energy doing it myself. I have no stamina right now. I feel good, just get really tired, body tired, when I do too much. And it doesn't take much to be too much. Luckily Jackson and I had an uneventful, pleasant drive. It felt good to be doing something that real people do. You know, people that didn't get out of the hospital on Tuesday.

My sister and her two boys and my brother and his two girls were at my Dad's as well. Jackson had the most fun I have ever seen him have tearing around the house with all the kids, chasing after them and climbing on them. They were all good sports and included him and played with him. He was exhausted Wed night when I finally got him to be at a quarter to nine. He had a great time.

Thursday we had our big thanksgiving turkey meal around noon with my Mom and Grandma joining us. Mom laughs that people tend to look at her funny when she says she is going to her ex-husband's house for Thanksgiving. But I am glad they get along well enough to pull it off. We just all want to be together and it is a rare treat.

I took off for Sray Central about 3:30 yesterday. My Sister and Dad packed my car for me and even got it warmed up. Jackson and I had another pleasant drive to Harker Heights. We got here just in time for another Turkey Dinner. Can't beat that.

My new laptop came in on Wed and David spent some time setting it up for me. So when I got here, I got to play with it and have declared it a beautiful piece of machinery which I fully deserve. This is my I had to be in the damned hospital for five days and missed an important-to-me audition and Hairspray for which I had $100 tickets. I also have a hole in my face. I deserve this laptop and give many thanks to its providers. Yippee!

Jackson has been the boy who wouldn't eat the last couple of days. Too much going on , with the kids and all the people. He just would not stop to eat. Refused all offerings of turkey. I hope next year he will understand the rare yumminess of a Thanksgiving meal and chow down with everyone else.

I am still working on the epic telling of the Toxic Pimple Saga. I'll post it when I finish, but I gotta warn you, it's gonna be long and may contain graphic imagery.

The Leukemia and Lymphoma Society called me to ask if I was interested in being one of their Honored Hero Patients for the upcoming fundraising season. Basically this is a team mascot in honor of whom people run marathons or triathlons. Not sure what else it entails, but I sent in my bio paperwork. We shall see what comes of it. I told them I would be happy to attend events and meetings, but I would probably have to come as the Chemo Queen. I think she deserves a repeat performance. Plus I have to promote my non-profit, right?

Hope everyone is having a great Thanksgiving holiday. I am so damned happy to not be in the hospital, this is probably my best holiday ever!

Tuesday, November 20, 2007

I'm Home!!!

Well, after five and a half days in the hospital, I am home now. I plan to post a big ol detailed post about the ordeal of the last week, but here is something I wrote on the laptop whilst confined.

Things That Suck about being in the Hospital
By Marsha Kysor Sray
Patient #80602142

So being here in the hospital watching paint dry has afforded me nothing but opportunities to appreciate the sheer suckage of my situation. Cancelled plans and missed auditions and all that aside, I am compiling a running list of all the reasons this sucks ass. Would you like to hear them? OK!

1. How many times do I have to answer, in front of god and everybody, questions about going to the bathroom? I swear I have answered questions beyond what you’d expect about frequency, cut, color and clarity and now they want to know if anything jumps up and sings happy birthday before I send it on its cyclonic adventure into pipeland. All I’m saying is it came from me; there’s three part harmony, sequined costumes and an oompa band. Anything else you want to know?

2. Mices, meeses that don’t work on borrowed laptops. While truly grateful for the loan of the refrigerator, I mean laptop, (seriously, the weight of this thing is ass-tounding) the mouse function on this thing leaves much to be desired. Translation: the cursor is effen crazy! The cursor arrow travels around the screen at a frenetic pace, lodging itself finally and immovably in the top right hand corner, precariously perched over the X button on this document. How can I compose brilliant healthcare satire while the Mouse of Damocles is hovering over the damned delete button? I understand working under pressure, but this is ridiculous! Any moment the mouse could click itself, cause it likes to do that, (everyone does), and my document could close with potentially unsaved, award winning work. Grrr!

3. For Christy’s sake the beeping! Trying to sleep around here is impossible. Everything beeps. The IV pole, the nurse call light, the blood pressure machines. Those are my favorite. When they come in to take your vitals at four in the morning this thing sings to you. Doot do-do doo, it sings as she turns it on. Do-do doooot, as your vitals come up. Doot- doooo, in protest as she takes the pulse-ox off your finger. Doot-dooo all the way out the door. Number five is alive, my friends and he’s keeping me agoddamwake all night long.

4. Winning the ‘It sucks to be me’ competition on your hall. Up and down the hall the patients square off eyeing each other, measuring the extent of each others ailments. I am not totally sure that I win, but with my bald head added to the left side of my face being the size of a softball with a target bulls eye nasty-assed red boil in the center of it, it is quite clear to everyone who glances my way that it definitely sucks to be cancer girl with a toxic pimple. Heh, shall I crown myself once again? I still have plenty of ribbon, I just need more stickers for the Miss Toxic Pimple sash. Pictures wouldn’t be as pretty, I’m sure.

5. (To the tune of Hallelujah) The foood is salty, fooood is salty, food-is-salty, food-is-salty, the food is salty!

6. No hot water in my room for two days. Nothing cleverly funny about this one. Come on guys, cut a girl a break. I at least deserve a nice hot steamy shower.

7. The TV remote control. The clever people that brought you the four a.m. vital signs are the geniuses behind the ninety-nine click button. It resides conveniently on your bedrail with the call button and the bed controls. It cleverly controls the tv with one button. Just one. The first click turns on the tv. Subsequent clicks turn the channels, but only one way, you can’t go back, just forward. It is nice that there are a full range of basic cable channels numbers 2 thru 99, but if you were watching channel three and want to see what is on channel four then decide you really do want to watch channel three you have to click the effen button 97 more times to get back to channel three. Actually make that 98 clicks because there is a free click between channel 99 and channel 2. This is the click that turns the tv off. That is right, if you are done watching channel 3 for the night you have to click the button those 98 more clicks to turn the fucker off. Sigh. Can’t get any exercise around here but my index finger is getting a workout.

Just to be fair, here are a few things that don’t suck:

1. I am so fricken happy that I had Lasik surgery this summer before I got sick. Particularly now that I am hospitalized with this toxic pimple on my face. With the amazing swelling of the left side of my face, including my eye, I would not have been able to wear my contacts. And putting a pair of glasses on over the swelling to rest so very close to the very heart of the raging bacterial beast on my cheek would have been damned near impossible too. Holy shit this would suck so much more with my coke-bottle vision of prior to July. Yay for Lasik!

2. My Mom. Having your own private RN staying in the room with you is a mandatory luxury. This woman never clocks out. My IV beeps, she's up from the bed checking it, changing fluids, and basically acting as my nurse even though she could probably get in trouble. None of my actual nurses complained and most were openly grateful for her taking my load off of them. Plus I got more sleep and got everything I needed in a much more timely manner. Thanks Mom.

3. Being so tired delirium sets in and provided unexpected fun. For example it was five a.m. a couple of mornings ago when it became clear from the constant nurse, tech and phlebotomist visits, we would not be sleeping anymore and we decided to give in and get up. Mom turned on some dim lighting and sat up in her bed to read her Time magazine. We were exhausted and the room was quiet except for the sound of her flipping pages. Into the silence, her high pitched voice rang out, "Why can't they leave poor King Tut alone?" May not seem like it to you, but this was the funniest damned random comment I have ever heard. We laughed so hard I literally pissed myself and she just kept going. "Says here they exposed his face after 85 years. They've been poking at the poor kid for 85 years. Why can't they leave him the hell alone?" Ah, delirium makes such good comedy.

Friday, November 16, 2007

Operator, please connect me with 1982

Hello world,

This is Marsha's husband, David, posting per her request to provide an update on how she's doing. The last few days have been extremely difficult for Marsha, and she's currently cooped up in a circa-1982 hospital room with no access to the interwebs and a single button, advance through all 17 or so channels one maddening button-press at a time, not-really remote control. She's doing somewhat decently health-wise now, but unfortunatly she's going to be stuck in the hospital the next couple days. It turns out that this was not merely some killer pimple seeking revenge for all the Proactive exfoliating, but an honest-to-goodness, last damn chemo treatment and she's done case of shingles. Shingles! Can't my poor baby get a freakin' break here?

So she's hooked up to an IV 24 hours a day getting alternate doses of fluids, anti-viral meds, and anti-biotics and will probably be staying in the hospital till Monday at least. We have to be real careful with this shingle because it's located on her cheek close to her eye and brain. So the doctors want her around so they can monitor the swelling is going down and her blood counts are going up. The good news is that she is at least feeling somewhat better. The fluids have especially helped as she was really sick and dehydrated the last few days. The not so good news is that she's feeling pretty down with all of the complications from her last chemo, and is extremely unhappy being stuck in the hospital all weekend. She was really looking forward to auditioning for a show on Saturday and going to go see 'Hairspray' in Waco on Monday, and now it looks like those things aren't going to happen. Not to mention the considerable discomfort and pain she has had to endure the last 4 months only to have this latest painful situation thrust upon her. So if you want to send her some nice words of encouragement or a short message I invite you to please add a comment. See, although her hospital room has yet to enter the 21st century when it comes to patient comfort, the nurse station in her room seems to be able to access gmail. So when the nurse forgets to secure it, as has already occured once, some measure of stealthy email checking is bound to occur...

Course we discovered they block Blogger, which is why I'm temporarily here. Sothereyago.

So that's about it. Marsha is hanging in there but mighty damn tired. She's been sick, unhappy, upset, angry, disappointed, stuck with needles by incompetants, and subjected to countless indignities, and that's just the last two days.

You're still my beautiful sweetie to me, baby, and I love you so much. I can't wait for you to come home.

Wednesday, November 14, 2007

How low can you go?

How is it possible to be brought so low by gastritis and a toxic pimple? These are the questions of the ages, my friends. Having spent the last two days and nights as miserable as chemo can make you, I am well and truly sick and tired of being sick. Have had a fever that won't stay gone and belly aches and gas pain and now the ultimate in humiliation - the toxic pimple.

See, my blood counts are so low as to be non-existent. This means when bacteria party in my system, I don't have any white blood cells to attack them. So last night in the midst of all my bellyaching, fevering and non-sleeping, there appeared upon my cheek one of those little adult pimples, the hard under the skin kind that hurt. I paid it no mind as I was focused on being miserable. But this morning and throughout the day it has grown redder, more swollen and throbs like crazy. I haven't touched it, poked it or any other terrible thing you aren't supposed to do to a pimple, but never-the-less it is an angry infected mess. My cheek hurts and is red and swollen.

Mom thinks this small thing could be the reason that my fever won't go away. I have a call in to the cancer center to see if they want to call me in an antibiotic. I am sure they will. Can't have a toxic pimple go septic and put me in the hospital can we?

Needless to say, after these miserable, horrible, never ending last two days, I am not going to make it to my audition tonight. Can barely move from the couch to the bed. But I wanted to post something cause the fact that I have been brought this low, at the end of my chemo treatments by a pimple just has to make you laugh somehow. You can laugh. Go ahead. I will join you in a few days when I feel less like death warmed over.

Monday, November 12, 2007

Bald self-portrait

Ahh, a morning breakfast that doesn't include a handful of steroids is a welcome breakfast. It is almost hard for me to imagine that I may never have to down them again. I may never have to sit for four hours while chemo drips into my body while I control my nausea. These thoughts are almost as surreal to me as the morning the nice doctor told me whatever was in my lung was malignant. Almost.

I am kind of feeling like recovery is going to take an intensive mind shift. I have spent months dealing with life as a series of good days and bad ones and with the mindset that I can't do certain things. After my next scan (cross your fingers) declares me clear, I will have to stop the knee-jerk I cant's and figure out how to live in the 'Yes, I fricken can!' mindset. Could be an interesting few months while I figure it all out. I do know that I can't simply try to rewind to before cancer and just keep doing what I was doing then. Too much has changed. It would almost be an insult if I didn't do something with my life, now that I get to have it back.

Perhaps the Chemo Queens project is something to pursue, and a book about my experience as a Chemo Queen.

My CT scan is on Nov 19th. I am going to be nervous about those results, even though I feel very confident that it will be good news. The best news.

Sunday, November 11, 2007

The Roids

I took my last handful of Prednisone this morning. I am so hoping I never have to take another handful again. I hate that stuff so much. Tastes nasty, have to butter it to get it to go down and it makes me feel like an invalid with a couple of horses galloping around in my chest. And I hate everything and everyone most of the time I am on it.

David and I and Jackson went to the outlet mall to look at plates this morning. But it was not a very successful trip. I couldn't keep up. Could barely keep moving and wished for a wheelchair. We looked at the Corelle store and at Faberware. Saw a few interesting things. But had to cut it short and come home, since chemo-prednisone girl was too much of a slow poke.

And I was rude to a saleslady at Faberware. I was feeling so crappy and this lady comes up in full sales mode too close to me and starts chirping at us. "Can I help you with anything?" I deadpanned, "No." She left us alone after that. But I felt bad. You aren't supposed to be mean to sales ladies. But geez, it was the outlet mall; a kitchen store with plates and pans and gadgets. I am sure she isn't working on commission. Why would we need super sales assistance at Faberware? Ug. Now I am justifying being mean to her. So I will stop. I was not friendly. I will blame the prednisone.

When we got home, I slept for about an hour and felt better. Not great, but better. We are going to Mary's later, after the boys are done napping for a pre-thanksgiving feast. I maybe an invalid, but there is no reason I can't go eat and hang out. Should be fun to visit with Mary and Dad and meet Mary's family. Hopefully I will be fit company. I have just been on the phone with Elaine and she has diagnosed me with Roid Rage. Sounds about right.

Tomorrow, no more steroids. Hip Hip Hooray!

Friday, November 09, 2007

Nap Trials

It is amazing how easily a day can go south when a two-year-old won't nap. Jackson has been particularly two today. Talked and yelled in his bed from noon till 1:30. Got up for a little while, was obviously tired. So I put him back to cry and yell some more from 2:00 till about 2:30. Then I went in and he wanted his sandals on. And his tow truck and all the blankets on him. Then he said 'night night' and went to sleep. Man. Don't know why he fights it so hard sometimes and heads in without a peep other times.

Makes me tired to deal with him, but all in all I am doing ok. Tired and draggy and cranky. But this chemo round is still a bit easier than the last few. Perhaps because I know it is the last one.

David is coming home from work a bit early, which makes me very happy. He can make the boy happy and ease some of the stress that I have been under today. I just need to relax and let it go. There isn't anything to be stressed about. I am recovering. I have a two-year-old. That equals stress, but really it is not so bad. But I will be glad when David gets home. Meanwhile, Jackson sleeps. And that is a good thing.

Wednesday, November 07, 2007

Chemo Queen Makes an Appearance

I didn't warn my Mother. I kinda figured she's read my blog, but if she hadn't gotten to it, then it would be a surprise. And when she walked in the door yesterday to pick me up, she was surprised by the Chemo Queen. She thought it was a great idea, in fact we had to parade through the ER so she could show me off to her co-workers. Everyone was really cool about it. I did wear it to IHOP where I got some stares and some people asked me about it. And I told them all it was my last round of chemo we were headed to. People did smile and laugh. There were only a few 19 or 20-something girls in one far corner who may have been sending looks my way. I was tempted to go over to them and take my wig off. Just to put some perspective into their lives. Instead I ignored them and enjoyed my lunch.

On the way to the Cancer Center, we stopped by the Palace to drop off the Piano/Conductors score for A Christmas Carol. Cliff and Mary Ellen accidentally left it at my house the night before. So I got to see all my office family in my gown and even the Habitat guys were up eating their lunch in the lobby and I got to say a fond and very princess-like farewell, waving with a cupped hand, before heading off to chemo round six.

When Mom and I walked in to the Cancer Center, it seems they were all waiting for me. "There she is, Miss America," I swear someone whistled. They were not at all surprised. Turns out a theatre friend, the newlywed Erin G. dropped by a bouquet of roses (seen on the right in first pic) and a huge chocolate bar (um, gone) for me earlier that morning. The card said to "Miss Chemo" so they knew I was pulling a stunt before I got there. But that was ok. Wendy and Yolanda brought out my flowers and chocolate and took my picture with them, which hopefully I will get an email copy of. This pic is of me and Marjorie, of the Breast Cancer Resource Center. I don't have breast cancer, but they don't shun me : )

The whole staff seemed to be having as much fun as I was. They kept sending in staff people and volunteers to the chemo room to come see "Miss Chemo" It was really a good thing. I got to have fun playing princess dress-up, the staff got a few laughs. And they were out a nurse and busting their asses for us yesterday, but always stayed in good temper, like Jennifer seen here, and I don't think anyone felt neglected.

I sat next to Lauren, a 25-year-old in breast cancer treatment. She has finished two months every other week of one set of drugs, now she is starting 12 weeks of once a week treatment on another drug. This once a week drug is not supposed to be as bad as the first kind, they told her the wort of chemo is over. But still, 12 more weeks.

Jennifer told me afterwards that Lauren had been feeling down and spoke of not wanting to be here at the cancer center today. That she hates being reminded that she is sick and to come get chemo you are surrounded by sick people and that makes it worse for her. So when I came in, Jennifer was really glad to sit me by Lauren so she could spend the time with someone not outwardly sick and suffering and trying to make the most of it. We talked about our kids, she has a two-year-old and a 6-month-old. She was diagnosed when her baby was three months. That must be so very hard to handle two kiddos, a husband in Grad school and her parents not real close. Lauren lives in Byran and comes here with her kids and stays with her parents for her treatments. So she does a lot of driving back and forth. People just do what they have to do to get better. Especially when you are 25 with small children and a husband in school. Cancer isn't fair. It strikes at people who should be thinking of nothing more than setting up a household and living day to day and finding pleasures easy to come by because your life is all in front of you. Damn Cancer.

You know, I had to buy ten yards of that ribbon to make my sash. And I noticed that Hobby Lobby has several simple tiara's for $12 - $20 something bucks. I am thinking that Chemo Queen or Miss Chemo needs to become a standard feature in cancer treatments. Young or old, anyone who is game should be handed a sash and crown to wear to whatever treatment they want. Do I smell a frivolous Non Profit Foundation forming in my chemo-overloaded prednisone clouded brain? Would Hobby Lobby, Party City, etc. donate some goods to the Marsha Sray Chemo Queen Foundation? Hmmmm. Hmmmm.

*Private message to Cindi with Ewing's Sarcoma.* Sister, you are going to be the first recipient of the Chemo Queen regalia. You have a long hard road ahead, but I know you will wear that crown!*

Of course now that I put this out there, someone is going to steal my foundation idea and some trendy(or not so) celebrity will be trying to repair their overexposed, ruined career by becoming the spokesperson. Can you hear it now? "Hi Yall, I'm Britney Spears and I don't have any hair either! Ha, well I don't have cancer, I just shaved mine to avoid a drug test, but look at my weave dudettes! It's awesome. So yeah. Wear a crown and feel pretty just like meeee!"

It probably wouldn't work, so Britney, stay away from my Foundation idea! I better get a 501 (c) 3 on this thing ASAP before the vultures steal it.

On a different note, let me tell you about my loot! This week I have been sent some wonderful gifts from people who love me. Now, don't think I only love the people who send me loot. I love all my friends and family. It's just the one's who send me loot make the blog. So you know how to make the blog don't you? That's right, send me the loot!!!

Ok. I'll start with the beautiful Amber necklace and black sparkly hat from Russ and Ellen. The hat was a perfect backdrop to show both the Amber and the Survivors Bracelet my Aunt Marsha sent me. Each color bead represents a different cancer. So gorgeous. I thank you ladies and gent. And Russ, Jackson loves the remote control car. He wants the remote to work on all his cars.

Yesterday morning I was answering the door like a fiend. I got a fex ex while dressed in a robe and my ladybug hat, which was the closest hat to me. The Fed EX was addressed to David so I Im'd him to ask him about it and he told me to open it. My awesome husband sent me a double-strand pearl bracelet, one white strand and one pink strand for cancer survivorship. He bought it from Blue Nile, the online store where he got my engagement ring. I love Blue Nile, their jewelry is certified and first class and their packaging is lovely and elegant. Made me giggle like a little girl to get Blue Nile jewelry for my last chemo. What a man. And it even matched my Miss Chemo get-up so I wore it all day.

My sister sent me an arrangement of roses, this time I was able to answer the door in full costume. The delivery guy didn't even blink. You know, the Fed Ex guy didn't either. I guess they are used to all kinds of bizarre people answering their knocks. Well, the roses are gorgeous and as for the note? Jen, I am so glad you are my sister. I couldn't have done better! Love you! See you Thanksgiving. You can pet my not-so-bald-anymore head.

I got home from chemo about 5:45 yesterday to a clean house. I like to arrange for Chela to clean while I do chemo. Thanks to my Dad for making sure I can pay for the luxury of a cleaning lady. It is so awesome to come home knowing I am about to be sick and just relax in my clean house. Nice.

And last night wasn't so bad. I took my nausea meds (1/2 Unisom Tablet and vit B6) before the nausea really hit me and although I did get sick, it was the most gentle of all chemo nights. I was uncomfortable. Queasy, but not all out miserable like I have been in the past. So the last one decided to go easy on me. That or only taking a half-dose of the Vincristine made all the difference. Yucky Vincristine. Blech.

This morning, I woke feeling pretty dehydrated and weak. I had some cereal and took all my pills and decided to blog a while and ignore the fact that I feel hungover. Too queasy for my comfort. I may need to go back to bed for a bit. I am usually energized a bit on day two. But maybe sparing me the worst last night means it just dragged it out a little into today. Oh well. Nothing a little nap - and two weeks time - won't cure.

Thanks everyone, for laughing, crying, supporting and loving me through this awful summer of cancer. It means a lot. And thanks to whoever left the copy of Goodnight Moon on my doorstep. Makes me smile to know you, whoever you are.

Monday, November 05, 2007

Last Chemo Tomorrow

I am all clear for my last chemo tomorrow at 1:30. And I have a gown, polished the tiara and made the sash. The Miss Chemo Stunt is prepared. I will either make a complete fool out of myself...or make a minor fool out of myself. But I am determined to carry out my stunt. It may make some other chemo patient smile. It is sure distracting me from the fact that I really, really don't want to go.

Dr. George scheduled me for a CT scan on the 19th of November. That will be the confirmation that I am indeed done. He says a PET Scan is not necessary at this point because the last one showed so little of the glowing cancer left that it wouldn't provide any more info that a CT and my insurance may not pay for one this soon after the last. And that works for me cause I don't have to starve for the CT scan like you do a PET scan.

Mom will be here at 11:00 to get me for a pre-chemo lunch. I want that full belly since it seems to help stave off the chemo nausea for a little while. I am trying to decide whether to wear my gown and tiara to lunch. How big are my gonads? Not sure. Maybe not big enough to go be-jeweled to the IHOP or wherever we decide to go. I will have to see how much I care what other people think when I get up tomorrow. I may be a big fat chicken. We shall see.

Sunday, November 04, 2007


Just got home from taking Jackson to Harker Heights to spend chemo days with David's folks. He has been a good boy this weekend, despite a wicked case of diaper rash. I hesitate to call it rash, it is more like a burn. Every once in a while he has what we have dubbed 'Acid Poop' and it burns the hell out of his skin. He woke up several times last night crying and we didn't figure out until this morning that it was his hiene. Normally when he poops, everyone knows it, but acid poop tends to not be stinky, so we didn't catch it in time. Every diaper change today was rough on him. He would cry for us to be careful and say 'almost done, almost done' while we we putting cream on him. I felt so bad for him. But his Omi is going to let him run around outside sans diaper tomorrow. She has so much space for him to play and he spends most of his time there outside anyway. He should be better in a day or so.

I have been thinking for the last week or so that I need to do something special for my last round of chemo on Tuesday. I have been thinking that I should dress in something fun and I decided on the way home tonight that I want to wear a gown and tiara and a sash that says something like "Miss Chemo 2007."

I called former beauty queen Andrea' to find out what I need to make a sash and she will help me make it tomorrow evening. I tried on a few old gowns I have stashed in my closet, but they aren't right. Either too tight and I felt like a sausage or too high-necked for the nurse to be able to reach my port. I need something fancy in a silly sort of way, that has a low neck and is comfortable enough to be able to sit through chemo in it. I also gain a couple of pounds of fluid in those few hours, so the sausage dress is right out. I called Mary Ellen at her poker game and she is going to help me find a gown in the Palace costume stock tomorrow. She says she has tons of gowns and we should be able to find something. So "Miss Chemo 2007" looks like a go. Hopefully I can pull it off without looking like an idiot. I just want to commemorate the occasion with a fancy dress and tiara, is that so wrong?

Saturday, November 03, 2007

Busy, Busy

I have been moving nearly non-stop since Halloween. Work has been so incredibly busy; Cats is selling out every show. We had a few cast members on Fox news on Thursday morning. Cathie, who plays Grizabella, sang a bit from Memory and although the mix was a little off on the studio mics, she sounded great. Mary Ellen was interviewed briefly and I think the news people were really impressed. When they were going to commercial you could hear them talking about how awesome they thought Cathie was. They were in full costume and makeup and looked fabulous. The clip is on the fox website and when Mary Ellen spoke to them on Friday they told her the clip had gotten like 8,000 hits! Too bad we can't sell that many tickets.
If you want to see the clip, here is the link. I don't know how long it will be up, but here it is.

Thursday evening Mom, Tonya, David and I went to the Leukemia and Lymphoma Society's free program on Non-Hodgkin's Lymphoma at Dave and Buster's. Mom and Tonya had never been to Dave and Buster's and had no idea what it was. It made me smile to see Tonya's face light up as we walked into the Midway. She bought a power card and she and Mom played $10 worth of games and had a good time. The program itself was interesting. They fed us dinner and A doctor from Southwest Regional Cancer Center spoke first about what Non-Hodgkin Lymphoma is and how it differs from the other blood cancers of Leukemia and Myeloma. I was surprised to learn how similar it is to Leukemia. It is the same cells that become cancerous, it just makes a difference when in their life-cycle that it happens. If it happens to immature, developing white blood cells in the bone marrow where they are made, that is Leukemia. If it happens when they are released into the system, they gather in the lymph nodes and become Lymphoma, and if it happens to fully mature plasma cells; what white blood cells swim in, that is Myeloma. Very simplified description and I don't know if I got that exactly right, but that is the general idea. And of the three Myeloma is the worst, it seems. The survival rate is not as high. I know I have said it before, but Yay Lymphoma! I am happy to have been stricken with you, my dying enemy. You are more easily killed than many of your peers and cohorts. Huzzah!

The other thing that I learned at the program is that I am really knowledgeable about my disease. The doctor really had little to say about progression, staging, and treatment that I didn't already know. That did make me feel good. That I know my shit. I have done my homework. I don't know how to be any other way. And I am truly glad to be living in the time of the internet, where in the comfort of my own home, day or night, I can sit down and google any question I have and be confident of finding some kind of answer. And it seems most of my research has been correct and the info we have gotten from Dr. George is complete as well. We are as educated as we can be.

I was interested to learn that the future of Lymphoma treatment may include a vaccine. Not something given to the general public to prevent it, but something made from a patient's own disease and given back to them to kill it. They take a biopsy, create a vaccine from it, and that is your treatment. Sounds infinitely superior to the hell of chemo. It is in phase II clinical trials on newly-diagnosed patients with Follicular Lymphoma. Which is not what I have. I have Diffuse Large B Cell. Follicular is a slow-growing disease whereas mine is an aggressive, fast-growing cancer. And even though I can't be in the clinical trials, I am glad to know that they are doing something different than simply developing more chemo drugs. It would be nice for future patients to not have to go through the nuclear war to kill the mouse like current chemo patients.

Mary babysat Jackson so we could all go to the program. She came bearing balloons as usual and he behaved like an angel, also like usual with sitters. When I got home and went in to check on him, he sat up in bed and said "Mama's home now," and went back to sleep. In the morning when I got him up he ran into the living room and started looking for Mary. He asked me where she was. He accepted that she was not here ok, but I still felt bad that he was so excited that she might still be here. Tells you a little something about my choice of babysitters, that Jackson loves them so much.

Last night, after a really busy day at work, I went to see NXNW Theatre Company's production of The Nerd. This is their first production after two years of planning and it was a good show. Well staged and acted. I had a really good time, even though I have been getting over and allergy attack or a head cold, not sure which. I was pretty draggy the past couple of days and by the time the show was over, I was sooooo tired and my body was achy and unhappy with me for not being in my bed. But I don't regret going. I have been invited to North By North West's 'get-the-word-out meetings for at least a year, doing scenes from On the Verge and monologues and making speeches about how theatre has impacted my life and why you should support it. David and I would most likely have been among the founders of this group if Jackson hadn't been due right around the time they started up. There was no way I was going to miss their inaugural production. I am proud of them for making it happen and the show was good. Here here, guys! You did it!

You'd think I would take today to rest, but I didn't. I had another show to see before chemo takes me back down. I was feeling much better from my allergies, thankfully, and had no trouble sitting through Wiley and the Hairy Man, directed by Andrea' for Second Youth Family Theatre. This time I remembered my camera so I could take pictures of the set and boy am I glad I did.

This was not only a cool set, but a really great show. I didn't know what to expect of a one-act youth-oriented show. But I was really impressed with the script and the actors. And the lighting and sound. Just impressed. The show centers on Wiley, a boy who lives in a swampy forest with his Mammy. Sort of a Cajuny setting. Wiley is afraid of the Hairy Man who lives in the forest and he has to confront his fear and trick the Hairy Man three times in a row in order to be rid of him. Besides Wiley, Mammy & the Hairy Man, there is an old-fashioned chorus. One that speaks and moves as an ensemble, finishing each others sentences, etc. They wore voluminous, camouflaged-yet-sparkly costumes with gold netting over their faces that made them actually part of the scenery. They were trees in the forest, nettle plants and at one point, when the Hairy Man turns himself into an alligator to scare Wiley, these four actors became the body and swishing tail of the alligator. Incredibly effective and magical and spooky. I loved it. It was the kind of show that makes me love theatre. Anything is possible if you use your imagination...and clever costuming, lighting and fog machines. Well done Andrea' I applaud you once again.

Speaking of getting into theatre, I have decided to audition for NXNW's production of Five Women Wearing the Same Dress, by Allan Ball. I read the script and it is a funny, irreverent, fantastic show about five bridesmaids, for different reasons, hiding out in an upstairs bedroom during the wedding reception. A good sink-your-teeth-into show that doesn't come along all that often. The only downside is that it auditions Nov 13 and 14th - these are serious bone pain days. But I am determined to go. I spoke to the director who knows my situation and she is welcoming of my audition. I wanted to make sure the fact that I will be coming off chemo isn't a problem. It shouldn't be. By Thanksgiving I should be doing great after my last treatment and I should only get better from there. So I don't care what I feel like, I am going. I am hoping that the Claritin for the bone pain experiment is successful. If not, I know that the pain usually peaks that Tuesday and I can usually expect to be off the Darvocet by Wed evening. I think perhaps with something like and audition for a great show to look forward to, my mind-over-pain powers will be increased. Doesn't matter though. I am going.

We took Jackson for a haircut this afternoon and though she may have cut it a little too short, he looks very handsome. He wiggled a bit and seemed to be a little bothered by the toddler nearby who cried the whole time his hair was being cut. But he did pretty good and looks good. Course I am not sure we will go back to Snip-It, a specialty kid's haircut place. It cost $20 and there was a little too much going on - music, movies, huge plastic characters and the crying child. Seemed to overwhelm Jackson as much as distract him. I think he would do just as well, or better at a quieter, normal, cheaper salon.

And now an evening of blogging, followed by reading. No TV tonight. I have been watching far too much TV this Summer of Cancer. I even bought that gigantic TV as as retail therapy. I'm sure you don't blame me. But my brain seems to be craving music and books again. It is just a little quieter in my brain without the commercials screaming at me. And Grey's Anatomy just isn't as compelling to me as it once was. Don't worry though, this is probably just a phase. After a time of reading books and watching nothing but TLC and Discovery Channel, the call of Crack TV will probably win me back. Unless I get cast in a show. Then TV goes out the window for rehearsals. Sounds like my old life a little. Could I really be almost done with chemo! I can hardly wait!