Roar

Thanks to Ronnifor the blogging award. Very cool. Though I have to say, it isn't difficult to have powerful things to say while battling cancer. Goes with the chemo, I guess.

To pass on the kudos I am supposed "to name three things that I believe most important to powerful writing and then pass on the award to five blogs I believe deserve recognition."

I think powerful writing is timely and unpretentious. Trying too hard automatically makes me take a writer less seriously. Less is more. I also admire humorists who say what they have to say and can make you chuckle or laugh outright no matter what the topic.

The Holmes is my first pick. He is expecting a baby any minute now. Always a funny guy and living on pins and needles in expectation, he penned a comic strip for his most recent entry (as of this writing). He often has profound insights and yet I never feel preached at. Also a playwrite, he is definitely roar worthy.

Next is Andrea in Toronto. I have never met her in person; she is a fellow cancer survivor who's blog, Cancer Culture, is a favorite of mine. Her entries often read like articles in Glamour Magazine such as A Fashionista's Guide to Cancer and her humor is one of a kind, as her entry, Wigs can fall into toilets and other perils on an afternoon out after chemo clearly demonstrates. She is about my age and is battling Hodgkins, another kind of Lymphoma, but her ability to accessorize to cover IV lines and radiation scars is inspiring to me. Fashionista, I am not. So it is nice to read the writings of this stylin' Canadian.

Jeff Tanner is a newly diagnosed Lymphoma patient in Fort Worth. His blog is new, begun in November for the sole purpose of documenting his treatment for friends, family and voyeurs like me (and now you). But this gent is amazing. He is driving from Fort Worth to Houston's MD Anderson for inpatient treatments. And he is blogging through it all. This guy is blogging while in the hospital, blogging on the drive from Houston to Fort Worth and back again. I've no doubt he would live blog his way through a bone marrow biopsy if he could. And he is keeping up his spirits and just doing what he has to do. I wish him and his family the best.

Julie of Julie's Dramas and Julie of Something Clever This Way Comes are both friends of mine and I consider them the blogging 'everywoman'. Moms both, they blog the trials and tribulations of motherhood, home buying, photography, baking, etc. And both are theatre ladies which makes them even cooler in my book.

Is that five? I could name more. I stuck with blogs on the web and not on Myspace. I disqualified Ronni since she passed it to me. I didn't pick blogs that are not regularly updated.

Anyway, I look forward to reading the blogs that are nominated by those I passed the award to. Keep writing everyone. With my new laptop I surf even more often. I need more to read!

Not much going on here

Been just hanging out at home mostly with David and Jackson the last few days. We managed a grocery run today in which Jackson insisted on being carried by his Daddy the whole time. Poor David's arms were done by the end of it. But we now have food in the house again which is good.

Tomorrow I am going to the movies with Elaine. We are going to a matinee of Juno. I have not been to the movies in at least two or three months. It should be fun.



I know I have some blogging work to do when I am not feeling so lazy. But in the meantime, enjoy a couple of pics from Christmas at the Sray's. Up top is me with my MIL Susanne and Kris's lady, Carrie. The other is Daddy helping Jackson with his Christmas presents.

Is there or isn't there?

Grrr, I am living in a constant state of health paranoia. With justification, I am watching the dent in my face in minute detail, taking stock of any tiny change. This afternoon I convinced myself there was a spot in the center that could possibly be indicating a return of infection. Now I am not so sure. The tiny spot I saw seems to be better than it was several hours ago. I have had no fevers, I have been checking. I finished the antibiotics a few days ago and have been on the lookout ever since. I have a second prescription for three more days of levaquin, but decided against taking them because my tongue started feeling 'furry' again and I was terrified the thrush was making a comeback. So now I am left wondering if three more days of antibiotic would have made a difference. I talked about it with my mom a few days ago and we decided the infection was going to come back or not come back and three days wouldn't matter. I took all the antibiotic prescribed by my oncologist. Three more pills would have cost me another $25 and I was scared of more mouth issues. So now I am scared of infection again. No fever, the tiny speck I was looking at seems to be nothing. We shall see what tomorrow brings. I will definitely be talking to one of my doctors if I remain scared to death. I feel totally crazy and out of my mind, out of control. Grrr. I hate this.

Other than my sketchy health, I had a good Christmas. Time with David's folks, time with my Dad and brother. Too many gifts. I got several nice pairs of earrings and a small, sweet crown pendant, I call it my chemo queen necklace. Gorgeous. Also ate way too much great food.

Jackson had fun getting way too many new toys. He finally got THE blue truck. He loves it. I will take a pic of it and post it when I get a chance.

Lunch with Friends

I am feeling somewhat better today. A little less emotionally fragile. I guess I will have good days and bad days.

This morning I got Jackson out of his bed and he said "Mommy home, mommy not at the hospital." Even though I have been home since Monday, he remembers me being gone. He doesn't seem overly upset about it, just happy that I am here. That is nice.

I had lunch with Elaine at Cafe Java. Joni and Leanne were there and sat and talked for a few minutes. I enjoyed seeing them. I realize that I can be around other people. Especially people who really know what I have been going through and want an honest answer to 'How are you doing?" I think one on one is better too. With a large group of 15 or so, the conversation is more surface and such a festive group makes me feel different, isolated amidst them. But I am glad that isn't the case, or wasn't the case today, with the ladies at lunch. It was nice to get out and talk to some people. So I guess I need a mixture of alone time and time with good friends.

Jackson is napping and when he get up David and I are going to take him with us shopping. I still have a few gifts to get. I sure wish I knew where my handicapped placard went. I can't find it anywhere. Mom said she saw Jackson take it out of my purse, but we have no idea what he did with it. Heh, he may have put it in the trash for all I know. It sure would be nice to have preferred parking the Sat before Christmas. Guess I will search a little more.

Inspirational to whom?

Am I still an inspiration if my positive attitude has taken a hiatus? If I swing from grief to anger several times a day and can't seem to stop the spontaneous crying jags? Am I still a role model on how to fight cancer if I don't want to be around people, friends, because I resent how their lives have simply gone on seemingly undisturbed while mine was hijacked by cancer? It really isn't Pollyanna of me to look in the mirror and not much like what I see. I don't wear my wig or any head covering anymore. Feels like a lie somehow. Who am I kidding?

I hesitate to write such things mostly because it upsets my family. But it is the truth of how I feel right now. More than a little bit lost. And a lot angry. I am embarrassed because I feel this way. I know all the reasons I should be happy right now. I am still here. I got timely treatment and my family has the means to pay for it. I know. I know. Believe me, I know all of the reasons I have to be grateful. I spent a good amount of my treatment this last 6 months feeling those grateful feelings.

Now that I am done with the worst of it, I have the time now to be mad, to be sad, to ask the infernal question "why me?" I have been reading another cancer survivor's blog in which she chronicles similar feelings following her last treatment for breast cancer. She likened it to Post Traumatic Stress Disorder. That made me feel better, that she felt just as angry after her treatment. So I am not writing this entry for all of you friends and family who read this to be reassured that I am ok, am making it. I am writing it for other cancer patients surfing the web trying to figure out why they are so mad after all this time. This is validation for them, validation for me and where I am right now.

You are damned right I am mad. I can't believe I had to do this, lose my hair, lose an entire 5 months to being sick, watch my son learn the lesson that his mom can get sick. I am angry that I have a dent in my face. I am sad that cancer can never be proclaimed well and truly licked and all you can hope for is one clear scan at a time. I am crazy mad at the sentiment that I should only focus on the positives, the 'gifts' and 'second chance' cancer has given me. I resent that each time I feel like sobbing and grieving, I feel guilty and stop myself from having that truly cathartic weeping session that I almost feel I need to have. I feel pressure to be emotionally more stable than I feel and that if I am depressed and upset this is a betrayal somehow of the people who love me and have cared for me all summer and fall. That to be unhappy and in mourning over what was lost is to deny all the positives that I know exist. I know they exist. I do. And I am well and truly grateful for many reasons. But right now I am grieving and I am not sure where to go from here and hopefully in a year's time I will have a better idea of who this new person inside me is. I am sure I will learn to love the person I see in the mirror once more.

But tonight, right now, I am just a little bit destroyed and I have yet to put the pieces back together. I assure you, I will do so. But I need a little room to breath first. To catch a grip, cause I really don't have one right now. I am not asking anyone to feel my pain, I just want to be allowed my pain. Like an 80 year old man yelling at the kids to stay off his lawn, I have earned the right to be a curmudgeon. At least for a little while.

Results, Sort Of

Dr. George left me a message this afternoon about my PET scan results. He said that there is some 'residual' stuff that has been stable since the last check and that this isn't unusual for Lymphoma. Also my LDH Protein level in my blood is 'elevated' but that could be from my being so sick recently and being on antibiotics. LDH protein is found normally in everyone's blood, but a high level is a tumor marker. Normal level is something like 60 and when I was diagnosed with cancer mine was 660ish. The first chemo round knocked it down to normal levels that quickly. Since this was a phone message and not a conversation I was not able to ask him what exactly my current level is, what constitutes a bit elevated. He wants me to come in a month for a check-up on my blood work. We had already planned to do this to make sure my white blood count was staying up there, but he is adding some 'extra' tests to that. He didn't seem to be overly concerned by my LDH level, whatever it is, because I have what he called a 'negative PET/CT Scan'.

David and I are not quite sure what to feel about the results. Is this good news? Is this bad news? Don't like the 'residual' business, but the 'negative PET/CT' sounds good. And what about the LDH level? I just don't know. I do know that no one is ever going to be able to tell me 'You are cured, it will never come back.' And that really sucks ass. David asked "Is this how it is going to be every month for years?" I guess the answer is yes. This is how it will be forever, I suppose. Uncertainty. Is it really over? Will it ever really be over?

Cause in a month my levels could still be all screwed up; the lymphoma could even now be gearing up for a resurgence. Or not. This could still kill me and that is terrifying. Really, truly, terrifying. I don't want to die. Pretty simple statement; I don't want to die. Who does? But if I want to live hard enough, if I really, really want it, will that make a difference? I hope so.

Please let this be over. For good. For David and Jackson and me. Let this be done.

PET Scan Fun

Bright and early this morning Mom and I headed to 38th street for my PET/CT scan. It went pretty darn smoothly, especially compared to last time when it took two needle sticks to get the IV and the nurse/tech lady was horrified by helping the cancer patient remove her earrings. This time the staff was great. I scored the awesome paramedic to do the IV the first time and the tech didn't make me drink every last drop of the barium. She was nice enough to gauge my size versus the huge cup of barium they give everyone and tell me to drink at least half of it. I spend my 'quiet' hour snoozing wrapped in warm blankets and surrounded by pillows and it passed quickly. The scan itself was a little different. I usually put my arms over mu head, this time they strapped them to my waist and also put a strap over my forehead to hold my head still. I haven't had to be strapped in and wrapped like a mummy before, but I didn't mind too much. I did get a pretty serious itch on the tip of my nose during the PET scan. I realized there simply isn't anything you can do when halfway through a PET you get an itch. My arms were strapped down and I wasn't allowed to move an inch even if they weren't. The last thing I would want is to have to start the test over cause I had to scratch my itch. So I started listening to the music they had playing and singing 'Feliz Navidad' with it over and over in my head. Eventually, the itch decided to go away unscratched.

This afternoon, I received a gorgeous winter flower arrangement, roses and white lillies with some kind of green berries, just gorgeous. When I opened the card I was surprised to see they were from David's work. DMi sent me flowers. The card reads, "As you rest and heal, know that you are thought of warmly and wished a quick recovery. Sincerely Digital Motorworks."

I am very happy that my husband works for a company that would make such a caring gesture. Of course, really, what this means to me is not simply that I got some pretty flowers, but that the company that David works very hard for values him as an employee and as a person. They give a shit that his wife is sick and that it must be very hard for him to continue to be there day after day taking care of business. He has missed very little work due to my cancer. He has had the opportunity to work from home when he needs to, a privilege he has not abused, and he really hasn't let my illness cause him problems at work. I think our whole family has come together to make sure it didn't. When your wife is sick with a very expensive illness the last thing you want is to screw up at work and lose your job and health insurance. So thank you so much, DMi, for sending flowers and caring that I am sick, but most of all for recognizing the kind of man my husband is and how lucky you are to have him working for you.

One of the executives met with David over some accounts yesterday and David told him that I was getting out of the hospital. Dom told him to get out of there and go home. So when I got home from the hospital yesterday it was to a clean house with the Christmas tree and candles lit. Very nice. He must have missed me a little bit.

I know Jackson missed me. My heart breaks a little for how hard it must be to be such a little boy with a sick mommy. This morning David had to bring him in to see me when he got up. He wanted to make sure I was still here. And this afternoon I was holding him and he said, unprompted, "Mommy home now. Mommy not going anywhere." Just breaks my heart. But he's right dammit, I am not going anywhere.

Tomorrow morning I go into the Cancer Center to see Dr. George. He should have some preliminary results from the PET scan. I am confident it will be all clear. I really think I have kicked cancer. Now I just need to kick pseudomonas and make sure my bones keep kicking out the good white blood cells. Come on bones, make me proud.

I have an eye appt on Thursday, but I think I need to reshcedule it. I would have a doc appt every day this week if I don't as I go in to see the ENT on Friday morning. He called me about 7:00 last night to make sure I get in to see him this week. I am sure the pseudamonas scares him as it does me. Hopefully he can help make sure we lick this thing and heal my face.

I have a dimple in my cheek now. It isn't in the right place for a dimple, it is too high, in the apple of my cheek. If it were just a little lower and to the left a tad it would just look like a red dimple. Not exactly what I wanted to get out of cancer. First, I wanted to just get out alive, but I didn't expect to be facially scarred. Not a cool consequence. Chemo sucks. I sure hope my insurance will pay for a little reconstruction/cosmetic help for me in a few months. Heh, this time last year I was about to film a commercial. Not with this face, baby. I simply can't seem to get rid of the anger over the dent in my face. Does that make me shallow? I am alive. Cancer and screw-ups have tried their best to kill me and I am still here. Battered and bruised and scarred, but here. I can't change what has happened. I have no control over what happened. I wish I could just shrug it off, say 'oh well' and get over it. Time, I guess.

So early next year, probably February, David and I are taking a trip to NYC to see a few shows. This is a gift from my Father. Neither of us has been to NYC and it is high time we get there. I know we deserve to go on a trip and have a good time and get away from all this horribleness. Hopefully by then I will be whole and healed and ready to have a fabulous time. If anyone has any show or hotel suggestions let me know!

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.