Hospitals are fun!

So. I'm home after another six days in the hospital. Six glorious days. Wanna know what I learned there? When I was hospitalized for the toxic pimple in November, we had it cut open and cultured it for bacteria. This was November 19th. I went home on the 20th. That same day this culture came back with serious results; my face wound culture had grown pseudomonas bacteria. (Read about it, it's fun!) But the ENT, who ordered this culture, was not sent the result. Instead, it went into the computer under the name of the Hospitalist Doctor under whose name I had been admitted. The hospitalist, having never ordered this test was certainly not looking for the results. And my ENT didn't go looking for it, probably because he didn't expect it to grow anything after my having been on massive antibiotics for days. All we know for sure right now is that I was discharged home on the wrong antibiotics for a Pseudomonas infection and no one read that culture result for three weeks. Not until I had a blood count of .7 and was re-admitted with the hole in my face becoming red and angry once more. And guess what antibiotic is the best defense against this terrible multi-drug-resistant bug? You guessed it, my favorite antibiotic in the world, Levaquin.

Isn't that a lovely story? David and I think so. My whole family thinks so. About the only people who aren't overjoyed with this story is the hospital who very nearly could have killed me. Killed me. Really. The story isn't over. It has several chapters in it,incuding many small mess ups that lead to a major mess up that cost me another six glorious days in the hospital. We will be studying this story up close as soon as I can get all my medical record together. News at 11:00.

Six days in which I could have been Christmas shopping and living my life that I should have had back by now since my last chemo was November 6th. Instead I got bone pain from Neupogen shots that thankfully raised my white blood count from .7 to 9.8. Plus all the antibiotics and pain meds that left me unable to keep anything down for a day or so. Lots and lots of fun.

I do have some more fun hospitalization facts to share. Such as:

1. If you run out of clean jammies while hospitalized and you ask your husband to bring more, he will bypass all the comfy underpants in your dresser and pick the cute uncomfortable ones. But you will adore him anyway.

2. People who build hospitals have absolutely no clue as to what it is actually like to be a patient. For example the door leading into the bathroom has this really pretty little marble ledge. They put this little ledge there because it keeps water from the shower, (which is the same level as the floor with the exception of the same cute marble ledge) from pouring into the room. But the serious design flaw here is that a patient entering the bathroom is almost always going to be chained to the six wheeled monster; the IV Pump. And this little ledge is just high enough to make it nearly infrickenpossible to wheel the IV pole over. And this pole is heavy and with a blood count of .7 I simply wasn't able to get the wheels over the ledge. My mom had to help and let me tell you it isn't easy for her either. After a while, like a good patient, I lost all dignity and generally left the IV outside the open door while I used the potty. Engineering geniuses, I tell you.

3. Like a fruit market, a hospital is a place you can dicker. After getting up to pee, I kid you not, every 40 minutes and battling the fine bathroom architecture, you can ask the nurse to turn off the fluids. If you are nice, she will call the doctor who will come back' with 'how bout we turn them from 125 per hour to 75? 'I'll take it', you'll say in relief, but secretly plan to ask the hospitalist tomorrow who will surely be someone you haven't seen yet.

Also, when being discharged you can have a bartering session with the hospitalist on exactly how many days of antibiotics you will take when you get home. "Dr. George said five more days would be ok." "I think we really need to do 10 to 14." "With the two weeks of thrush madness I have just been through? Are you counting the days I have already been on it while here in the hospital?" "We can do that. So Dr. Georges five, plus three more." "Ok, but can I have the 500mg instead of the 750mg?" "Done, and I will give you an extra pill in case you lose one." Uh huh. In case I lose one. Cause adults do that a lot. No, I get an extra pill just in case I forget what we agreed on and you can get me to take an extra day. I am on to you, silly hospitalist, can't fool me.

4. Sometime you are more knowledgeable then your caregivers. This is especially true when you are a cancer patient who spent the last 5 months obsessed with blood counts and Neupagen/Neulasta bone pain. When my counts reached 4.5 yesterday, we rejoiced, "My counts are up! Yippee! But wait, my chart still calls for me to get Neupagen. Noooooooo! No more bone pain, my counts are up! I don't want it!" So when the nurse came in with the shot, I simply declined. 'No thanks.' You can do that, ya know. You can just say, 'I don't want that.' Later when the day's Hospitalist came in, I was proud to learn I was right, I didn't need it. An order just stays and order until a doctor gets around to calling it off.

5. There is a point in post-cancer hair-growth when putting on a head cozy or turban wrap makes you look more like a cancer patient than your own short, short hairs. I am not quite at that point, but almost. It is uncanny how fast my hair is growing. From fuzz to down to almost real hair. Soon, very soon, I will have hair.

6. Post-cancer hair growth is not always a good thing. I didn't take a razor to the hospital and my underarms chose this week to grow, grow, grow. I would rather see my eyelashes return so aggressively. I could do with out the arm and leg and (ahem) hair.

7. Even if you have never been a law-suit kind of person, certain events can make you think perhaps you should become one.

Glad to be home people. I have shrugged off a lot of anger and pain and bitterness and I am ready, fucking-A ready, to get back into life at a sprint. Look out world.

Here we go again!

Just a quick note to let everyone know that after a checkup with the ENT about my face this afternoon, they discovered my white blood count is way too low again. After consulting with my oncologist, I am being admitted once again to Georgetown Hopital, thrush, mouth sores and all. So I guess I will be out of touch again for hopefully a very short hospital stay. Sigh.

Spin the Wheel!

Hey everybody, let's spin the Wheel of Random Maladies and see what we land on this time! Come on, it'll be fun! I've already done facial abscess and dyshidrotic eczema and am currently greatly suffering from multiple canker sores that hurt more than childbirth and will not heal for any bribe, coercion or pleading. But lets just see what the wheel lands on this time, shall we?

Ta Da! Looks like it's my lucky day! I have...wait for it...Thrush, yes, thrush; yeast infection of the mouth. Disgusting to say the least. No wonder that my mouth is a war zone of constant pain and a haven for canker sores. I have thrush from being on antibiotics for over a month because of the facial abscess. This is awesome!

I went to the doc this morning and just picked up four prescriptions from the pharmacy. Now I am now trying to time them all correctly. Oral thrush meds, liquid thrush meds, lidocaine mouthwash for the pain and a steroid paste for the canker sores. Complication: the steroid paste will exacerbate the thrush so I really have to be careful not to get any of it anywhere but on the canker sores. That requires yoga moves that I simply don't have as the biggest sore is on the upper right gumline as far back in my mouth as you can get. Can't reach the little fucker(ha little, it's huge)! Also, looking at the two canker sores I can see, the big one in the center of my tongue, yes tongue, and the little one on the lower right gumline, I think they look like they have thrush hanging out in them. So I don't want to encourage the thrush to hang out any longer. So I guess I will hold off on the healing steroid goodness until the nasty white thrushies have had a chance to die a miserable death like the devils they are. In the meantime I have the lidocaine numbing gel.

(I will get better, right? I am not going to continue to be a magnet for all random crap infections for the rest of my life, right? Right?)

The weekend trip to Santa Anna was fun, if pain-filled. My mouth hurt so bad pretty much every minute that there were times I simply had to keep my mouth shut. It hurt to talk and eating has been a luxury I don't have. Food equals pain. Mary and I trucked it into Brownwood to the CVS pharmacy for canker sore meds. There is a whole wall of them. I had a hard time choosing which ineffective over-the-counter drug to waste my money on. So I chose two. And they provided distraction and a sense of 'doing something' if not any measurable relief. And the time spent talking with Mary was nice. (What a gal. I like her so much!)

But the Store Christmas Party was fun. I like to see all Dad's employees and I just think it is so awesome in this economy and culture to see hard working average joes get generous Christmas bonuses. My Dad believes, as I do, that as a business rises, so should the employees that made them rise. Not just the CEOs and other executives, but the workers. That makes him somewhat of a relic, but I admire him for sharing the good fortune with his employees and I love to be there to see it happen.

In addition to bonuses for the employees, he has presents for every kid and spouse there. He does pass the buck on the actual shopping for these gifts, he sent an employee with the money and list of kids/spouses and she bought everything and wrapped it all and brought it to the party.

Jackson got a present too. But there was an incident. An unfortunate, heart-breaking, probably-gonna-scar-him-for-life incident. Do you remember when I blogged a few days ago about my son asking to go to Target for a blue truck? Weeeelllll, another kid at the party opened his gift and it was the blue truck. Not a blue truck, THE Blue Truck, Tow-Mater from the Cars Movie. I didn't realize it, but he had seen and wanted this exact blue truck and this is what he wanted Mommy to take him to Target to get for him.

The poor child saw the truck being opened by the 3 year-old who got it and Jackson simply lost it. It took me a few minutes to realize the major catastrophic event that had occurred. Took me a minute to realize that he was crying because he wanted that truck, not because he was one of the last to be handed a present to open. By the time we found the present with his name on it, he was too broken to have any interest in opening it. David and I removed him and his present from the living room and took them to the bedroom. I thought the chaos was the problem. I helped him open his present, which was a great big yellow dump truck, something he would normally adore. But it only made him cry harder. "Don't want the yellow truck, want the blue truck! Bluuueee Truuuck!"

David and I were beside ourselves, trying to balance the terrible raging need to take the emotional pain away from our son and the need for the boy to understand that you sometimes don't get exactly what you want. And let me tell you, this is a damned difficult lesson for a two-year-old to learn when a kid in the next room possesses the exact toy he has been dreaming about as long as his little mind can remember, which is probably a week or two. And there was no way I was going to try to wrest the truck from the oblivious three-year-old or try to Tom Sawyer him into a trade for "the cool yellow dump truck for that crappy blue truck they gave you. You don't really want that truck, do ya kid? No, you deserve this rad new Tonka Dump Truck, you are too much of a big boy for little blue trucks, aren't you...."

(excuse me for a second while I rescue the boy from the slinky wrapped around his leg - how the crap did he do that?)


Back to the story: So as it was after 9:00 p.m., well past Jackson's bedtime, and he was clearly inconsolable and screaming, David and I made the command decision that we just needed to put him in the crib and let him yell. Which he did. But I stayed close by the door listening and after a few agonizing minutes his scream changed from "Bluueee Truuuuccck!" To "Yeeellloow Truuucck!"

I kinda figured that would happen. Jackson is a smart boy and he quickly catches on to things like 'my stupid parents are not going to get that blue truck away from that kid and give it too me, so I may as well play with the grudgingly cool yellow truck that they will let me have.' When I heard him yell for the new truck, I went back in and gave it to him in his bed, he layed down and asked to be covered with his blanket and said 'night night'.

Dad and Mary got a kick out of the incident, Mary said had she knows it was transpiring she would definitely have gotten the blue truck from the poor kid who got it. She says rescuing Jackson is more important than property rights. And we argued the rest of the visit about who exactly would get to the store first to buy the blue truck for the boy for Christmas. Cause you know he has to have one. Can you imagine how happy he will be to finally get the coveted blue truck? I can't wait to see it!

Heh, on the drive home we passed a SuperTarget in Cedar Park and my super-smart son started talking softly in the back seat, in an almost defeatist whisper, "Go to Target, get a blue truck." David and I didn't know whether to laugh or cry. My poor abused darling. Santa will bring you a blue Tow-Mater truck, I promise.

I had an appt with a dermatologist today to see about the craptastic rash on my hands. Painful blister-like bumps that itch like crazy and hurt when touched. They think it is a form of eczema that comes with stress. Me? Stressed? Who'da thunk it.

While I was there I also took the opportunity to show them my healing face and see what they thought about scarring. It is a cosmetic surgery office too, so I figured they'd have some thoughts on what we can do in the future. And they did. I am not so worried about the color/texture of the scar, just the fact that when I smile or move my cheek, my range of motion is inhibited and the scar puckers/dimples like crazy. Not exactly what I want to see forever. But they said that the dimple will fill in some and when it is all healed up they could even use a plumper like they use in lips and frown lines to fill it in and get rid of the divot. Nice. Probably expensive and not covered by insurance. We will just have to see how it heals and how much it bothers me. Maybe I'll get used to it. Or not.

I also have a suspect mole on my back they want to remove in March. It is not an emergency, the Doc said, but it is the kind you would watch closely, and since I have already had cancer and the mole is in a place I can't monitor he wants to get it off soon. Not while my immune system is still compromised, but in a few months. I am all for that. No skin cancer, please. I have had my fill.

When David gets home we are heading to Dad's place in Santa Anna for a day or so. It is his store Christmas Party tomorrow night and as my Dad has pointed out, it is a fun party that I like to invite myself to. Yup. I invited myself and I am not ashamed of it.

Oh, interesting development in the Kysor family! Malcolm Kysor, serving life in prison with no parole for a drunken murder has escaped from prison and has been on the run since November 25th. He climbed in a trash can and went out with the garbage. This is my father's first cousin; a kid he played with growing up. Dad doesn't think he is dangerous, just an alcoholic who made a terrible mistake and killed someone. I have a relative on America's Most Wanted. Somehow I feel that makes me cool. Maybe not.

Jackson, The Great

I am beginning to feel like a human again, healthwise. I even had some moments today that were decidedly upbeat, happy even. I enjoy being back at work. Something to do, people to talk to. Busy, busy, but I like it. I remain excited at how popular the Palace is becoming and how many tickets we are selling all day. And the number of people that come in to buy tickets now is great. And we will be going high tech in the next few weeks - headsets and putting orders directly into the computer instead of writing up and order sheet and then inputting a stack of them. I can't wait.

Jackson has taken to being back at work perfectly so far. The last two days he has gone to his nap without protest and slept two or three hours. I have been pleased with that for sure. I was worried he wouldn't want to go back after such a long absence.


That boy is getting so damned smart! It is scary how he keeps surprising me. He will bring me a book to read to him and as I turn the pages he will tell me what it says, in essence reading the book to me. He has them memorized! And I know I have not read some of these books with him more than a few times. Granted he has had several caregivers this summer who may have read certain books multiple times, but still, my kid is crazy-smart. I am allowed to say so, I am his mother.

Also he has begun to request trips to Target and HEB. When he wants new balloons he says we need to go to HEB. And yesterday he told me we needed to go to Target to get a blue truck. He knows that Target is where little boys get new toys. Preferably cars. He has learned this after so many Target outings when I was sick and chemo and just wanted to go somewhere. Target was often the destination of choice. Jackson talked about Target most of the day, but oddly didn't seem all that upset that we didn't go there.

I think we may be reaching a critical stage in pre-potty-training behavior. Jackson has started coming to me asking to be changed. He doesn't like to be wet or dirty. Of course when I ask if he wants to sit on the potty he says "No." Quite adamant. So I think we are almost ready. We may need to get a new potty chair. My sister gave me hers, but Jackson seems to be afraid of the big pee guard that stick up on the front. He has to be careful sitting down so it doesn't hurt his privates. I think perhaps a guard-free potty chair may help. I have been warned by the ladies at work that potty training is trial and error thing, heavy on the trial. I'd like to have him trained by the time he turns three so we can get him into some kind of pre-school. Most pre-schools won't take a diapered three-year-old and I don't blame them. Surely Jackson will be interested in the potty in the next 8 months don'tcha think? I hope so.

And in the bill saga, I made one phone call to Austin Pathology who said Aetna denied coverage, which they didn't. They had the wrong ID number. Same at the Emergency Docs did. The emergency docs who finally did file a claim under the right ID number only to say that David was the patient, not me. So Aetna only paid 80% since David has not reached his yearly out of pocket max. So Aetna called them for me and got them to file a corrected claim. Also I got another $345 bill from Georgetown. Same account. The first bill was for statement period 8/01/07 - 8/01/07which came two days ago and the other bill was for statement period 11/30/07 - 11/30/07 which I got yesterday. Apparently my post-dated account is past due. Nice. Of course they told Aetna day before yesterday they had 'already sent this claim on to be corrected' so hopefully they won't send me to collections for money I don't owe them.

In other news my husband will be having an upper GI to see if he has an ulcer. His stomach upset continues so they are going in to have a look next week. I wonder why David might have an ulcer. Hmmmm. Any ideas? Not sure whether to hope the find one or not. If they find one, they can treat it. If not then he just has an upset stomach for no reason. Then I guess we try to find the right medication to make him feel better, cause OTC stuff ain't doing it and neither is the expensive prescription he was just on. We shall see.

Bills Bills Bills

Once again I am on the phone with Aetna. Georgetown Hospital again sent me a bill, for $345 this time, for which my EOB from Aetna says they can bill me nothing. So I am getting Aetna to call them. Every bill I have gotten from Georgetown, save two, has billed me for money I don't owe. They have a nice Community Relations lady, but that really doesn't mean much when they either have the most incompetent billing department or are running a huge billing scam to fund their laboratory. I just wish I didn't have to research and make phone calls for every other bill I get. My stack of incorrect bills grows, from several different facilities. I just hope they are actually getting fixed after Aetna calls them. I am not paying them and don't want to end up in collections for shit I don't owe. Cancer is less complicated than all the fricken paperwork I have to wade through.

Of course without Aetna I'd be up a creek, so thanks to Aetna, my own personal Mafia. You tell people on my behalf to stop sucking and I only have to pay you several hundred dollars a month in protection fees. Thanks!

Ok, here you go, Aetna talked to the billing dept in Georgetown who told her that this has already been sent for correction. So maybe they have reviewed all my claims and are fixing them all at once. This is a good thing. Course in the meantime, if they could refrain from sending me incorrect bills for $345 my blood pressure would sincerely appreciate it.

Went to work yesterday for the first time since November 5th. Jackson stayed home with his Dad so it was a good trial run. I had a good time entering orders in the computer and answering questions. The Palace remains steady with ticket sales and Christmas gift orders. I am happy to be well enough to get back to work. Today Jackson comes with me so we shall see how he slips back into the routine...or not.

After work I met Andrea and Leslie for dinner at the Melting Pot. I had never been there. Fondue is something we have at David's folks house on Christmas Eve every year. And the restaurant was a lot like that with a little more variety. And it was expensive. We had a good time and the food was good. All three of us failed to bring a camera so no pics.

Tonight is night three of Tin Man on Sci-Fi channel. We are having a good time watching it, even if for some reason Zooey Deschanel's character has the flattest affect ever seen on prime time.

Anger, why do you linger?

I'll admit it. I've been down for a few weeks. I am not sure what I expected to happen after I finished my last chemo, but I know it wasn't a five day hospital stay followed by a hole in my face and major weakness. The amount of anger that I have been feeling since I missed out on my audition and started wearing a band aid on my face has been larger than the disappointment would warrant, I think. I have just been so mad. Bitter. Pissed off. And I am beginning to realize that in the back of my mind I expected to finish my last treatment and hit the ground running after a momentous visit from the good health fairy, who would wave her magic wand and reward all of my pain and struggles with long, flowing hair and my old strength and stamina. Also I would immediately shed these five or six prednisone pounds that make my clothes all too tight.

Of course none of that has happened yet. I keep waiting up for her at night, but I guess she isn't coming. And I really am going to have to go through several months of awkward hair stages to get to something I might like when I look in the mirror. And to both get my strength and my waistline back I am going to have to work on it slowly but surely. No more lying around for days eating whatever I want. Sigh. Where is that fricken fairy?

So yeah, I have been avoiding blogger because I have been feeling so very angry and I wasn't sure what to say about that. But since Friday I have been getting out of the house a little and finding a bit of stamina. And finding what exactly has been bothering me so much.

Friday night I went to the opening of Andrea's play, Rough Night at the North Pole. This is a kids Christmas show and pretty cute. She did a really good job with the set and costumes and has some first rate actors in her cast. And a few newbies...ahem...but a very enjoyable 45 minutes.

After the show, about 12 of us went to Tres Amigos. It was really good to see everyone and to be out and about like a healthy person. But I was carrying a lot of the above mentioned anger and as I sat with the group I realized that I feel different. Like the world is now split up for me into two groups, cancer and other catastrophic event survivors and everyone else. And I am not sure how I fit into a 'mixed' group anymore. Not sure what my identity is anymore.

I realized I have lost the ability to chit chat. I don't know what to talk about that isn't cancer and I can't even manage to answer a simple question like 'how are you doing?' How do I answer that? Friday night I was still very bitter and being among my theatre friends who are doing shows and auditioning and rehearsing shows and their lives have not had a five month derailment, I don't know how to answer that question. I can't say fine and keep a strait face. I can't say 'good' with any conviction and I am sure they don't want to actually hear how I am doing which at the time was incredibly bitter at my disease and awkward about being among them, the healthy. So I just said 'decent.' That is the best I could do.

But I managed to relax some and enjoy being out. And Andrea' and I managed to have a few minutes to talk about what was bothering me. And that is when I realized I was waiting on the fairy to come give me back what I have lost. She also thinks that I didn't have the luxury of getting really angry and grieving when I was diagnosed, when I lost my hair, when chemo really started to suck. I didn't do it then. So now, after cancer's death throw of putting a hole in my face and ruining my plans to get back into theatre (read: my life) I am now feeling all of the anger and grief that I held off all summer. Perhaps. It sounds good to me.



Saturday, I started feeling a little better, a little less angry. My Dad and Mary babysat Jackson while David and I and the band aid went to the DMi Christmas party at the majorly swanky Barton Creek Resort. I can't fit into any of my dresses right now and I didn't want to buy anything. But when I chose my Chemo Queen gown, Mary Ellen sent me home with a couple of other gowns that fit and looked nice. So I wore one of those. I hate it that five extra pounds can kick the crap out of my self-image, but I am a product of American media. And I really don't want a bunch of comment on how terrible I am to obsess over my weight. I know it is stupid, but there it is. It bothers me. But I managed to feel ok about the way I looked, even with the band aid. I have to say that I love my wig. It really helps me feel good; pretty. I don't need it every day, but a ladybug hat at a swanky party just isn't gonna cut it. And my band aid isn't even that visible in the picture. Huzzah.

We had a good time at the party. The food was excellent. They did the whole casino night thing they do about every other year. I didn't gamble, though. I sat at our table with Machelle, the wife of one of David's co-workers. We sit with the same two couples every year and have always enjoyed each others company. Every year we have to find something to steal. Not because we are all cleptos, but because three or four years ago at the Austin Hilton, they had a big block of cheese on the buffet as a decoration. A nice block of some kind of white cheese, probably a Parmesan. And Machelle really coveted it. She wanted it a lot. So when the staff was clearing the buffet we asked what was going to happen to it. She said they only use them once and get rid of them. So we stole it. Took it off the buffet and Machelle carried it out of the building. Last year David and I put part of the centerpiece in her purse when she wasn't looking. This year the only stealable items were the Christmas tree balls on the buffet. So we took some of those. Interesting that we don't steal 11 months out of the year, but in December, you have to tie down your centerpieces.

This morning, about 11:00, Dad and Mary showed up to see if we wanted to go with them to Teo's Gelato in Austin. A young woman, Desiree, that Mary is acquainted with was having a fundraiser there for the Leukemia and Lymphoma Society. She just finished treatment for Non-Hodgkin Lymphoma in September and is training to run a marathon with the LLS Team In Training program. This was one of her fundraisers, so we headed down to participate and meet her. The gelato was really good and meeting Desiree was too. She and I commiserated a bit about the horrendous suckage that is chemotherapy. And we talked about the Honored Hero program. She is not only participating as a runner, but she is also going to be an honored hero for a triathlon team. She was excited to hear I am going to be a mascot too. She is going to talk to the lady in charge to see if I can be the hero for her marathon team. That would be pretty awesome. Desiree was very cool and definitely someone to look up to. Chemo in September and already training for a marathon. Granted, she did them before Lymphoma, but still. Chemo takes a lot out of you and the determination to bounce back right away is admirable. I guess I need to figure out how to stop being angry and feeling separate from my old life so I can get back to it. Sounds easy, but I have a good idea that it isn't going to be.

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.

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.

Thanksgiving

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!

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.

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.

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.

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.

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!

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.

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.

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

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?

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!