Sunday, December 30, 2007


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!

Saturday, December 29, 2007

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.

Wednesday, December 26, 2007

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.

Saturday, December 22, 2007

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.

Friday, December 21, 2007

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.

Thursday, December 20, 2007

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.

Tuesday, December 18, 2007

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!

Monday, December 17, 2007

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.

Wednesday, December 12, 2007

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.

Monday, December 10, 2007

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.

Friday, December 07, 2007

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.

Wednesday, December 05, 2007

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.

Tuesday, December 04, 2007

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.

Sunday, December 02, 2007

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.