Halloween!

Jackson decided that for Halloween this year he was going to be stubborn. No costume. No way. I have blogged about how he simply must be in charge of his own wardrobe, having to choose his own clothes every day. He is really quite firm that he get to decide. So David and I were pretty certain we would not be allowed to dress him in a silly costume and take adorable pictures and go trick or treating for the first time. And we were right on.

The best we could do was a black shirt and some cute pumpkin socks. No dice on the big pumpkin I bought for him to wear over the black shirt. No dice on a reprise of the chicken costume from last year. Sigh. Very disappointing. But very, very typical Jackson. David and I pouted for a while about it, but as Jackson got such a kick out of handing out candy, we got over it...a little.

Jackson got so excited about the kids coming into the yard and coming to the door for candy. He would run out to meet them, waving in their faces saying "Hi, Hi, Hi!" Then we'd give them candy and they'd say "thank you" and he would run after them alternately saying "you're welcome!" and "tick or teet!" He didn't even care that we were giving away the candy he was so desperately into.



He managed to get a few pieces of chocolate and some sweet tarts. And he was pretty wired on candy. Here he is in mid-candy dance. He would dance, dance, dance, up and down the sidewalk waiting for the kids to come. He had a ball. Too bad he wasn't in a super-cute costume.


I wore a real Kimono that someone donated to the Palace this spring. It somehow got stored in my closet, I am not sure how that happened. : ) It was a little snug, but David helped me get it buttoned and I put on some Geisha-ish make-up real quick as it got dark.


David wore his ducky pajama pants and his "A is for Jerks" T-shirt and looked real cute. All in all, we had a decent time handing out candy. I am just excited for next year, when Jackson may humor us and wear a costume and we can go trick-or-treating.

Where oh where are the payment checks going?

This morning I am engaged in the other must for cancer patients, besides chemotherapy and recovery - on the phone with the insurance company. I am on hold with Aetna who is calling Georgetown Hospital to talk about why they are sending me letters saying they have not been paid, when Aetna sent them checks in August. This is not exactly how I want to spend my morning, but I am at least happy that Aetna is willing to advocate for me and call the hospital. I talked to billing last week and they started in on me to get copies of the checks that Aetna sent and fax them in, etc. Um. I am on chemo. I really don't think I should have to spend my time gophering between the hospital and the insurance company. Call me lazy, but I just don't feel like it. So Aetna is handling things, I hope. I hope she comes back on the line to tell me it is taken care of.

I have had such trouble with Georgetown Hospital billing people. First, they decided to kick me out of their lab, even though they take my insurance, then they sent me letters saying they haven't been paid and now , once they let me back into their lab, they had the gall to ask me for a $25 co-pay for lab services yesterday. I don't have a co-pay for lab services. Never have. I asked Aetna to double check and they said no, there is no $25 co-pay for lab services. I think Georgetown is just trying to get some money out of me. They are tired of the pitiful reimbursements they are getting from Aetna - example $72 for a $460 bill, and they want to fool me into paying them a $25 bonus each time.

The lady at the Georgetown desk is really nice and has gotten to know me a little and she confusedly asked me for the co-pay, saying "Hon, there's a memo in the computer that says I am supposed to collect this co-pay." And when I said "nuh uh" she smiled and put another memo in the computer that said "Patient said there is no co-pay." So next time, I will get Aetna on the phone right there and have them talk to the billing office and put the smack down.

Ok, well the Aetna lady said that Georgetown has 'found' two of the three missing payments and has put a search out for the third. How interesting that when I call, they want me to run around getting proof of payment paperwork and canceled checks, but when Aetna calls, they simply 'find' the payments. Convenient.

And I should say that the people we are calling are not actually in Georgetown. Of course not, that would be too easy. They are at some corporate HCA facility somewhere in 866 world. HCA owns Georgetown so it is actually them sending me the letters. I don't know who the $25 memo culprit is. But I suspect if Georgetown were actually sent the checks and did their own billing, perhaps they wouldn't lose things as important as measly payment checks.

Sigh. Healthcare bureaucracy is about as fun as chemo.

Light the Night Walk

Saturday night I went down to the Dell Children's Hospital for the Leukemia and lymphoma society Light the Night Walk. Mary's company happens to be one of the sponsors and she had planned on being there. So my Dad, David, Jackson and I went too. Since I do have lymphoma and all. And I wore my new Ladybug hat I got at IKEA of all places. It is a child's Halloween costume. It came with a mask with antennae. But I just love the beany by itself. I also got a bumble bee hat. I am definitely wearing one of them to chemo. And maybe to work this week. I got lots of compliments at the walk.


Dad likes to give Mary a hard time because her daughter goes to A&M and he is a UT guy. So Saturday he bought outfits for them to wear to the walk. He forced Mary to pose for a picture which he insisted go onto my blog. So here it is, Dad. Nice pic : )


There were so many people there, I was amazed at how many. They gave us lighted balloons to carry. Red for supporters and white for survivors. Of course Jackson being Jackson insisted on carrying a white balloon since there were so many red and so few white. He just has to be special. He also liked one in each hand.


He got a little overwhelmed at being out past his bedtime and with the noise and the crowd. Before the walk started, we found an out of the way corner where Jackson plopped down on the ledge and people watched. Funny how little personality traits of the parents pass down to the kids. While he chilled in his spot, we enjoyed some pizza and Popsicles, two of Jackson's favorites.






The walk itself wasn't too long. We walked past the children's hospital so the kids could see us all with our lighted balloons. We could see them in the windows watching. It was pretty neat.



Of course about halfway through, my feet were really mad at me. Their numby-tinglyness turned into numby-pain and I really wished we were done. But I trucked on and David and I got our picture with the banner at the end. He signed it that he and Jackson were walking for me. "My beautiful wife and Jackson's mother." He is so wonderful. He has to take the lion's share of Jackson-wrangling nearly all the time since I have been sick. I can't carry Jackson and I have a hard time getting him in and out of the car. David takes the physical burden of Jackson without complaint, even though doing the Lymphoma walk with a two-year-old on your shoulders must have been tiring, he did it anyway. What a man, what a dad.

Casino Fun

I decided to go to casino night with Elaine and I am glad I did. We played black jack with a fun dealer, Mike, who played fast and loose with the rules to our advantage. He double payed, gave out big chips for good hands and just had fun with us. Every once in a while a Sertoma leader guy would come over and say "Is this guy cheating ya?" and grab handfuls of chips and scatter them to us all at the table. So not serious, and we were just pretending to know how to play. All in all it was fun. We turned in our feast of chips to tickets at the end of the night for prize drawings - which of course neither of us won. But that was ok. I managed to ignore my upset stomach and my achy-numby feet and just have fun.

This morning my Dad picked up Jackson for the day and David and I drove out to Florence for a brief visit to the Paula Matthews benefit at the city park. It is such a nice day out and I am feeling better today, for the most part. We ate some bbq, I said hi to some old friends and just showed my support for the family. Paula is battling cancer and they need all the help they can get. I just wanted to pitch in a little. I gave them some Palace tickets for their silent auction, too.

And I saw S there. A boy I was in love with from the time I was able to have crushes at like 10 years old till I graduated high school. I even did a little bit of pining in college for him. One of those things. Bad boy, not interested in the little sis of his best friend. Rejected me much of my youth, despite my valiant efforts to snare him. I succeeded briefly my senior year in high school, but it was short-lived. He just was not interested in my love and devotion; he was cool. I was shocked to see him today, didn't realize he still lived in Florence, but he does. I was actually really happy to see him because now meeting him as an adult, my first thought was "Hey, that's S! Awesome!" Followed quickly by "OMG, I have no interest in him. I am not affected! Awesome!" So there you go. The subject of years of girlhood sighing, secret romance, flippant rejection and my first broken heart and I was able to say "Hey, nice seeing ya!" and meant it.

Better Now

So after unloading on my blog, I have calmed down and feel much better. I am still upset, but am now willing to admit I probably won't suffer permanent damage. And simply knowing that it is the antibiotic that is making me continue to feel crappy makes me feel better somehow. I know the source and hopefully my stomach will settle in another day or so.

I am sitting here trying to decide whether to take Elaine up on her offer of a casino night event. Sertoma is holding a casino night and it sounds fun. Do I feel well enough? Not sure. But I do kinda feel like getting dressed up, putting on my wig and some make-up and going out and having a good time. Forgetting for the evening that I can't feel my left foot. So perhaps I will go. Hmmm...pondering.

Incredibly Angry

I am so terribly angry right now I find it hard to breath. For the past two days I have been taking Levaquin as prescribed by my doctor. This is an antibiotic he prescribed because I had a fever. For two days I have been feeling awful. Body aches, increased numbness in my hands and feet, terrible bloating awful gas pain, little appetite and indigestion. For the second night in a row I got little to no sleep. I have been depressed and tired of hurting with crying spurts and all that. Most of these symptoms have felt to me like simply more of the chemo effects. Feeling crappier than ever round five of chemo, 8,9,10 days out.

This morning I felt somewhat better. My stomach was not as upset, I felt ok. Then I took my third dose of Levaquin. And within an hour, I feel like shit again. I put it together and decided it must be the antibiotic and decided to google it. And the results of the google search have sent me so far over the deep end, I am not sure when I will be back.

Levaquin. Turns out to be one of the most widely-claimed life-changing poisons prescribed in bulk to the stupid, guinea pig public. Here I was feeling like this round of chemo is just really hanging in there and now I realize that is not the case. Normal, non-cancer patients feel like they are undergoing chemo when they take this drug. Healthy, normal, uncompromised individuals report life-changing illness after taking this drug.

Here are some highlights of this beauty from fqresearch.org: The Fluoroquinolone Toxicity Research Foundation

The Adverse Drug Reactions (ADRS) Associated with the Fluoroquinolones include:
Spontaneous Tendon Ruptures Toxic Psychosis Insomnia Anxiety Attacks Irreversible Peripheral Neuropathy
Hypoglycemia Liver Failure Heart Failure Fatal Reactions Vision and Hearing Loss DNA Damage Kidney Failure
Skin Damage Brain Damage Stephen Johnson Syndrome Blood Disorders Gastrointestinal Disorders Rashes
Toxic Epidermal Necrolysis Phototoxicity Burning Pain Joint and Tendon Damage Strokes and Aneurysms


Holy fucking shit! Do you think I need this? Do you think I have not endured enough poison and pain and possible permanent damage, and sleeplessness and depression and enough horrible sick days to last me the rest of my life without giving me five doses of a totally unnecessary goddam antibiotic that may permanently damage me? An antibiotic?

Cytoxin, Vincristine, Doxyrubicin. These are poisons that are taking my body to the literal near-brink of death to kill the cancer and I am happily infusing them into my veins so that I might be here to see my son grow up. And one little fever, not even one that kept coming back, one high temperature and they hit me with another poison so toxic there is a research organization dedicated to getting it off the market!

Irreversible Peripheral Neuropothy!!!! Can you believe it? My hands and feet are already so numb and painful and irritating from peripheral neuropathy due to the vincristine chemotherapy. I had already resigned myself that this may take six months to correct and there is a chance it may never get better and I was prescribed an ANTIBIOTIC that has been known to cause severe permanent peripheral neuropathy! Why couldn't we have tried a little penifuckingcillin? Is that too much to ask?

I googled Levaquin side effects and easily found this site with post after post of normal healthy people reporting devastating neuropathy after taking this drug for one course. Scroll down post after post and read what these people are saying happened to them. Now I am left with the feeling that if my hands and feet stay like this, if I am forever to be clumsy and irritated and hurt and numb, that there is a chance, a nagging doubt forever, that if this is permanent it is because of three days of Levaquin. This is what I need in my life right now. Thank you FDA.

I feel so incredibly betrayed and angry and volatile. I can barely find words enough to describe the level of bitterness I feel right now. How could they do this to me? How could they possible think this was the right thing for me to have? And what am I supposed to do now?

I wish to hell I had googled this before taking it today. I have already thrown out the last two. I called the cancer center and left a message for the nurse to call me, that I will not be completing this course of antibiotics. I chewed three tums tablets because when I picked up the poison the pharmacist specifically told me not to take tums or antacids as it keeps the Levaquin from 'bonding' with something or other and reduces its effectiveness. So I sent three tums in to battle Goliath in my system.

I am angry with myself too. Because I have always made it a habit to actually read the accompanying side effect medication documents they give you with your prescriptions. I have always pulled them open and read thru them so I would know what side effects to look for. And three days ago I popped the pill without even glancing at the material. It is still stapled shut to the bag it came in. I have just had so many prescriptions, so many awful chemo drugs that I just figured it didn't matter. I am on chemo, shutting the gate after the horse got out, I guess. It was an antibiotic. Harmless compared to the chemo, I thought. Crap.

Four years of wonderful

First Andrea took me from this...



To this...



My Dad said "Pull my finger" to save me from tears and runny mascara...




We vowed before our friends and family and by the power vested in Kyle...




We danced...


And kissed...

Had the best groom's cake ever...




With Guy Forsyth...



We left in a rain of bubbles...




And lived happily ever after.

In the BC days, when I would hear that someone has cancer, my mind would immediately picture a bald ten-year-old clutching a teddy bear in a hospital bed. A kid with the biggest grin surrounded by the grossest of situations. "Oh poor kid," I'd think. "That must be awful." And the kids would get their wish of a visit by their favorite celebrity or a trip to Disney World and I'd think "That's great that people do that for those kids."

And when I was diagnosed, that is kind of what it was like for me. There was a frenzy; a whirlwind of activity. I was sick; tests and treatments could not come fast enough. The drugs and the illness and the treatments made the first six weeks fly by in a haze of surreal drama. It was an almost exciting existence. I could focus on the adventure and the positive news and the overwhelming support as our families circled the wagons to deal with this crisis.

It wasn't until round four that the awful normalness of it all set in. There is not so much whirlwind adventure, just more of the chemo. More of my Mom doing my laundry and me being sick. My body is in much worse condition than it was after round two, now I cannot recover completely from one before I have to get the next. I blogged once about the wilters, the other chemo patients I would watch wilt during treatment while I bounced in for my infusion and bounced out a few hours later. Now I am a wilter. Round five kicked my ass before it was fully in the vein, there was no bouncing out to get my ears pierced afterwards.

It is just a different world than it was for me, even in August. The thing about cancer treatment is that it keeps dragging on, long after the 'excitement' is over. I find myself complaining a lot more and I dread the next round of chemo something fierce. I mean I really don't want to do it. If blubbering like a baby would mean I never, never, never had to go back there I would do it.

Today I woke up at 5:30 running a fever. It took me a little while to realize that was what I was feeling because the achy, warm way I feel all over with a fever is the same kind of feeling as the tail end of the bone pain. But I got up and took my temp and sure enough had a 101.3. I got my mom up. Not exactly sure why I got her up now. I was just feeling pretty sick and the Cancer Center has taught me to fear fevers. So we got up and she sat with me. And when the office opened I called to let my doc know. The had me come in for an informal look-see. I got there about 10:00 and they drew some blood for a count. And we waited on the couch in the lobby forever while they ran the labs. My counts are really low, which means I am at risk of infection, which means antibiotics. And they took more blood from my port to culture in case that is the site of the infection.

This is the first time since it was placed that I had the port accessed without my numbing cream and boy-howdy that hurt. I am very thankful for my numbing cream that I don't have to feel that each time. I may start carrying it with me, just in case. Kidding, I am not that much of a baby. I am a big girl. And I said that, out loud while the nurse accessed it. And Jennifer, my super nurse, was nearby and heard me. She said "We know that. I knew when you first came in here you could take a lot." And she said it with such seriousness that it gave me pause. I mean, I know I am tough, I'm still here aren't I? But it doesn't seem that special to me. Does she mean that? Does the cancer nurse really think I am tough? That is kind of cool I guess. Made me feel better about my whiney-babyness lately. Jennifer the cancer nurse thinks I am tough. So there.

My Dad showed up this afternoon. He was worried about me. He doesn't like to hear of me being drugged up on the couch for a whole day. He is mistrustful of too much medicine and he and my mom have always clashed on the topic. He thinks she is influencing me into taking too much drugs, and she doesn't want me to hurt at all. I am somewhere in between the two of them. My mom will tell you that I argue about every damned pill she puts in front of me. I won't take the vitamins she wants me on. I won't take the pain meds before I am in agony.

My Dad just had to come look at me, he says. We went to the store together, just me and him. And we talked. I told him to trust me, that I don't like the drugs any more than he does. Less at this point, if I never had to take a darvocet for bone pain ever again I would be ecstatic. I too, am wary of sleeping pills and overkill pain meds. But honestly, I am not talking cliche here when I say that the bone pain is as intense as labor pain. It really is. I gave birth without pain meds and I would do it again. I have stamina and endurance and a high pain tolerance. But the unrelenting buffeting of my own bones against my body is simply staggering. I hated sleeping yesterday away in a drug haze, but the pain is really that bad sometimes. And with only one more round to go, those days are numbered and neither my mom nor my dad will have to worry about it any more.

Tomorrow is my fourth wedding anniversary. I am sorry to say that we have no plans. Not being able to say one day to the next how I will be feeling, it was not really possible to plan something special. David took the next two days off, so hopefully we can ditch the boy for a few hours and take some time together for lunch or dinner or a movie maybe. Something. I am sad that we don't have a celebration planned. It's just another cancer victim this year.

Grrrr....I am feeling sorry for myself again. I have got to stop. It is ridiculous to be upset about all the little stupid crap when I am going to be cured of cancer. Does anything else matter? Anything? No. Not to me, not to David and not to Jackson. Feeling sorry for myself has no place in this life! So there. Fuck Cancer.

What day is today?

The bone pain has come right on schedule. Yesterday afternoon and into the evening it joined me on the couch. It is a little different this time in that it is deeper in my joints which makes it difficult to walk. Also different this time is the fact that my Mom came back to stay a few days, determined that I should not hurt as much this time. I am terrible with pain meds. I don't take them enough, I let them wear off, I let the pain get really bad before I take them. But today, my mom has kept me on a schedule, by the clock. So I barely start to hurt again, before I am conked out on another dose. I have been sleeping most of the day with brief half-hour wakings to eat something. I can't say it hasn't been nice to sleep through so much of the pain, I just don't want to do this several days in a row. So we shall see what tomorrow brings. Today, my private nurse kept the good stuff coming and food in my tummy to stave off the nausea. And though I feel I have lost a whole day, it beats 12 hours of constant pain.

My mom is awesome.

I'm Home

Spent a few hours in the ER to determine that everything is as screwed up as it should be and no more. Chest X-Ray looks good, EKG still ok, pulse rate too high, but not showing heart damage. All good news. Just wish I hadn't wasted the gorgeous afternoon in the ER. But I guess I would have just spent it at home in my own bed and would still be worried about my heart rate. And my Mom can sleep better knowing I am not in congestive heart failure from the chemo.

I am just ready to have some fun times and be done with all this. Sigh. Few more weeks.

Saturday

My heart rate is still too high, whether it is because I am not doing well enough on my fluid intake or whether it is the meds and chemo. So my Mom, who is charge nurse in the ER in Georgetown today, wants me to come in for fluids and maybe a chest xray. Just to check on me. She doesn't think they will want to admit me. Will probably just fill me up with IV fluids and send me home to bed. But I guess I have to do what Mom thinks is best. If only because she deserves some piece of mind that she is doing everything she should. And Dad and David agree since my heart rate was just 144 again after a two minute walk through the house. I gotta go in. Blah. Wanted to go out into the gorgeous Saturday and spend it with my husband and son. But I gotta do what I gotta do till this treatment is over. It is quite apparent that chemo does not get easier, just gets harder and harder until it is done. And thankfully it is nearly done. One more treatment first week of November. Makes me smile to remember that. One more.

Tonya is coming to get me and take me to Georgetown and David will hang with the little boy. I will post with updates as I can.

Enjoy the sunshine for me, everyone!!!

Thursday - Two Days Out

Omi Susanne took some great shots of the boy while he visited at her house. Here are a couple of good ones.


I am doing ok here in chemo-land. Yesterday when I went in for my Neulasta shot we told the nurse about my pulse rate being pretty high. Orthostatic, my mother called it. Ok when lying down, too high when standing up, with an accompanying drop in blood pressure. I was impressed with how responsive they were in bringing Dr. George out to see me and talk about it. He decided a quick EKG would be a good idea just to check on my heart function. He felt my high heart rate was most likely do to a little dehydration, but just to be sure, they sent me outpatient into the hospital for an EKG. Took 15 minutes and they let me take a printout back to Dr. George in the Cancer Center. An 'interpreted' printout will come later after the cardiologist looks at it, but a plain old printout was enough to make Dr. George feel ok about sending me home to rest. My mom made sure I was laying on my butt for the rest of the day and much of today. I am to report any chest pain and keep checking my pulse and blood pressure. We have an electronic unit here at the house so I just slip it on every few hours and check. Pulse is still a little high, but not as much as yesterday. And I feel pretty beat, but no chest pain. Just tired.

It did scare me a little to see the readout yesterday say my pulse was 149 because David just did that stress test on the treadmill and they had him walk and run on it for half an hour to get his heart rate up to 150. And I just got out of bed first thing in the morning to a heart rate equivalent to that. Not good. But I am glad we checked it out. It worries me a little that my right atrium is showing enlarged. Some of the chemo meds cause heart damage and I hope this isn't a sign of things to come. Mom thinks the right side is enlarged because of all those months trying to pump blood through my screwed up right lung. Maybe. I just will have to keep an eye on it for well...forever I guess.

Today my Dad came and took over for my mom. He and Jackson went to the grocery store and came home successfully having picked up staples and stuff to make chicken alfredo lasagna, which was great. I am keeping a bit better control of my appetite this time and not eating us out of house and home. I eat when I am hungry and ignore the Prednisone monster in my gut. It actually isn't so intense this time. Maybe my body is starting to realize that I am well fed again and don't need to stuff my face all day long. Which is good. I also feel in better control of my mind this round. Not so foggy, not so confused and emotional. I am very tired and drained and ready to be done with this whole treatment process, but my coping this time is better. Resigned. I rested on the couch and in my bed today without panicking that life is going on without me and that I have to get out and do something and not waste a whole day. Today I just lay around and tried to rest.

Tomorrow I hope I'll be strong enough for an outing with my Dad and son. Not sure what to do. Don't really need to shop. Maybe the park or to get the boy a haircut. We shall see.

Hope everyone is doing well out there in the real world. I hope to see you all there again real soon.

Chemo yesterday was hard. I started feeling nauseous before they even accessed my port. I could smell the medicines and anticipates and my brain got ahead of my body and started early. Some of the first drugs they give me though are anti-nausea, so that helped a bit. But having chemo so early in the morning, I wasn't able to eat a big meal. Too early for me to do more than nibble. So the Benedryl got me terribly high and I couldn't even move my head to see how much was left in the bag for fear of the room spinning and either throwing up or passing out. My Mom was great though, when I mumbled and slurred "How much is in the bag", she knew what I meant and could tell me that it was done.

About half hour later that began to ease, but my legs got restless and jerky. So I lay back in the recliner and Mom rubbed them for a while. That helped a lot. I just tried to relax and chill but it seemed like this round took forever. I was anxious for it to be done. 7 bags of medicine and 2 of saline takes a long time to infuse. The last bag went in too quickly and I felt weired sinus pain and pressure and a headache like brain freeze. I told the nurse and she said that is normal and that she did infuse it faster than normal. Next time we will slow it down. She gave an extra bag of saline to counteract the headache and after a few minutes it stopped and we could go home.

The nausea began pretty soon after we got home and continued mostly unrelieved the whole evening. Elaine came over to sit with us and keep us company. She is wonderful. Just hung out and let me gripe and moan and watched TV. At about8:30, when I'd had just about enough of the nausea and jerky legs and was just weepy and ready to be done, Mom gathered all the medicines I needed to take before bedtime. Which included my birth control pill. She brought out the little blue plastic box. If you an not familiar with oral contraceptive packaging, you open the box, fined the pill marked with the day of the week and push that pill through the foil back. Mom and Elaine passed the thing back and forth and looked and fiddled with it and couldn't figure it out. For a brief moment we all looked at each other and started howling. I just had to say it. "Geez, you lesbians are worthless when it comes to birth control." and we all had a good laugh and it felt great.

There was some spirited talk in the cancer center yesterday. I had a youngish women (40's)sitting next to me and an elderly (80's) lady sitting across from me and my Mom and the nurse, Laurie sitting by me hand pushing some meds. And the talk came to religion. I am not sure how or why it did. But we got into some not-overly heated discussion of the separation of church and state and what that should mean. I actually can't remember everybody's points as I was being poisoned at the time and didn't say much. But after it calmed down the nurse asked me quietly what I believe. So I was honest. I told her I am agnostic. I am not ready to say that there is no god and I am not ready to say that there is. And if there is, then who has it right? Cause I see a whole whole lot of religions that say they have it right and everyone else is wrong. And that belief leads to a whole lot of death, destruction, war in the worst cases and political maneuvering and subjugation and forcing of wills by laws in the least case. She asked why not Christianity, so I had to tell her my breaking point with church.

I told her about Nui, my junior year of high school she was a foreign exchange student from Thailand. A really great girl full of love for life and adventure and as nice as can be. We became friends. I was searching at the time for what I really felt about religion and Nui and I spoke of Buddhism, which was her religion and Christianity that I had been somewhat raised in. It seemed to me that the basic tenets of how to live a good life were the same. Be good to each other, don't step on those below you, help others, etc. We didn't ever get too far into it, neither of us was theologically educated enough for an indepth comparison, but it was enough for me to understand that we aren't all that different.

The very next time I attended church, a man I had known for years as a nice, charismatic friend of the family, was the guest pastor that day. And he gave a wildly enthusiastic performance in which he spoke forcefully that the only way into heaven is through Jesus Christ. That in no uncertain terms, if you do not take Jesus Christ as your personal savior you are going to hell. He said these words, each one punctuated by a forceful fist to the palm. I was shocked. This is the closest I had ever seen to fire and brimstone preaching and I knew this man as a gently family man. When asked about those who had no access to christian churches out in the world, his answer was that it is our job to go and tell them this fact. And at 15 years old, I knew, knew, without a doubt in my heart that my friend Nui was not going to hell for belonging to a religion that teaches to lead a good life and do as much good with it that you can. I simply lost any hope of ever being a part of an organized religious group again.

I am not saying I don't believe in Jesus. I am sure he was a great and wonderful man who taught a lot about how to live a good life. That is as far as I can go. As far as virgin birth and death and Ascension, I simply have not got the requisite faith. I need proof and that need rules out a life in organized religion. And I just do not believe that anyone has the right to go into someone else's land or home and tell them that they are wrong. Not Thailand, not Iraq and not America - understand me Osama? You don't have the right to blow up our buildings and make war because we are not a Muslim county. What I say applies to you to.

Ok, now I am beat. Shouldn't be thinking so much day after chemo. My pulse rate was really high this morning, 146 at one point and I am not obeying my mom and lying son the couch. Instead I am inciting theological debate on my blog. I should stop now.

I guess I just want everyone to let everyone else live and worship or not worship as they see fit. Wish we could do that. I do not mean to set off a firestorm of comments from my many friend who do belong to churches. I respect your belief. Sometimes I envy it. It must be so comforting to believe. I was born a cynic and sometimes I regret that. Not always, but sometimes.

And I do want to say that while I have been sick, I have received countless number of friends and family graciously praying for me. And I am accepting of any and all good wishes in what ever form they mean the most to you and I would not belittle these gestures for the life of me. Thank you all for your prayers and thoughts.

I think in the future, when people ask me about my religion, I will simply tell them I worship at the theatre. My fellowship is there, we do good by making others happy, we teach young people to reach for their potential and we bring happiness to many. That is enough for me.

Chemo Tuesday!

Dr. George cleared me for Chemo tomorrow. My neutrophils were 75% on Friday and that reads normal - not chemo normal, but normal normal. So bright and early, at 8:30 a.m. tomorrow I get round five of six. Yay!

I asked Dr. George about the likely hood of me needing radiation and he said that based on the way my last scan looked and the size of the tumors to begin with, it is not likely that I will need radiation. He said that Hodgkin's Lymphoma patients need radiation more often than Non-Hodgkin's patients like me. Hodgkin's tends to leave bulky and/or dead tissue tumors that need zapped whereas Non-Hodgkin's tumors more often shrink and disappear. So I am not anticipating radiation. That means that I will get my last chemo about November 6th and a PET/CT scan that next week. When that scan comes back clear (and it will) I will be done with cancer treatment! By Thanksgiving I should be feeling good and looking forward to good health...and hair. I will get scans about every three months for the first year, maybe two. Heh, goodbye cancer, but not goodbye medical bills for a few years.

While I was checking out at the Cancer Center, I noticed a flyer on the wall for a Lymphoma conference night at Dave & Busters on Nov. 1st 6-8:30 p.m. It is a free conference all about non-Hodgkin's lymphoma treatments and new research and future directions for NHL, as they call it. I am definitely going to go. I am very interested in the why's and how's of treatment and research. I read like crazy, cause I have to know as much as I can. So this is definitely a must-attend thing. And it is free, dinner provided, in a cool environment. I just need to find a sitter. Anyone? Beuller?

David had a heart stress test today. Looks like his heart is in good shape. We didn't really think there was anything wrong with his heart, but for the past few months he has been having pains in his chest and abdomen that were possible heart related but more likely stomach-related. He has tried a few different medicines, some OTC, some prescription for heartburn/reflux but nothing has worked. The doc sent him for a stress test, then an ultrasound later this week to rule out gall stones. I doubt it is gall stones. I think it is an ulcer. And if the ultrasound turns up no gall stones, we'll get him in to see a gastroenterologist to talk about an ulcer. His job has been stressful all summer and his wife has cancer. And we have a two-year-old. Recipe for an ulcer? I think so.

Tonight is pre-chemo-Jacksonless night so we are going to dinner with Elaine to use the other half of the gift card from David's company at Macaroni Grill. Then maybe half-price Books for some chemo-reading goodness. Then home in time to watch Heroes at 8:00 and prep for tomorrows house cleaning. I love to come home from chemo to a clean house. Offsets the nastiness of chemo a bit, to have a clean house.

We have been watching Heroes on Netflix, the first season. And we got caught up on season 2 last night. They are putting the full episodes on the internet once they have aired and our new badass TV has the capability to connect to the computer. We tried it for the first time last night. David brought his computer, keyboard and mouse into the living room and used the new cables we bought to hook it into the TV. picture my giant TV acting as a computer monitor. It was so cool. We accessed the internet, pulled up the show website and were able to watch the first three episodes nearly full screen and crystal clear. Not commercial free though. They have one sponsor per episode and about 1/2 the number of commercial breaks. Course it is all the same commercial. Intel and Sprint over and over. But still better than regular TV. It was pretty cool. I told David that he is not aloud to hook the computer to the TV for gaming purposes. Though I am sure that would be cool, I don't want to see the monsters being gutted or the war games portrayed in that big a scale. yuck. Plus the TV is my realm in the evenings. Cancer-girl gets first dibs on TV shows. I watch too much. But given that I do have cancer and that requires a lot of couching it, I figure I have a pass on that one. When I am better I'll do a show again and rehearsals will get me outta the TV watching habit.

I am hoping to be able to audition for something this year that opens early next year. I need the affirmation of theatre after completing my treatment. I have a great wig and access to a hundred more so having no hair shouldn't be an obstacle to me getting cast in something, I hope.


Jackson comes home on Wednesday from David's folk's house. Susanne sent pics of his day, as usual. I love to see what he has been up to. And it more often than not involves water, water and more water. Watering plants is a special favorite past time at his Omi's house. Cute boy, great pics!

CATS Commerical

Friday night we went to the opening night of Cats at the Palace. I was pretty impressed. Though there we several bobbles and tech issues that we noticed because we are theatre people, the Georgetown crowd was blown away. It is amazing the amount of dance involved in Cats and there are many fabulous moments in the show. Cathy Sheriden who plays Grizabella and sings Memory is superb in both her acting and her vocals. I was wowed and want to see the show a couple more times before it closes. We rented the costumes from a professional company in California and they were worth the at least 10K we spent. They look great. Check out this commercial that one of the cast members made and put on youtube. Pretty cool!

The weekend

We dropped Jackson off at David's parents house today on our way home from my Dad's in Santa Anna. He called and invited us earlier in the week and we decided at the last minute on Saturday to go for a quick visit. We had a good afternoon of rest and Jackson got plenty of outside time and got to play with Mary's dogs. He also had an infortunate ice cream accident. His daddy was trying to help him push up his push-up and the ice cream popped out onto the sidewalk. I had to take a picture of the incident. He actually didn't get all that upset, just a little sad and kept staring at the ice cream on the sidewalk. Made me giggle.

I got my labs drawn Friday before work by the worst phlebotomist yet. She was so sweet and nice, but damn, what a ham-handed mess. Some people, using the same style needle and vacutainer system, can get a few vials of blood and I barely even feel the needle. And some people, like this gal, can cause an inordinate amount of pain and damage doing the same thing. I just wanted to tell her that she really sucks at her job and should find something else to do for a living that doesn't involve needles. I swear, she dug and dug and finally got in the vein and my arm hurt for at least a half an hour afterwards. She really was nice, so I didn't yell at her like I wanted to when she asked me while digging "You doing ok?" How am I supposed to answer that? "Uh, you are hurting me and I wish I had gotten the other tech." Of course, I just hesitated for a second before saying "Yeah, I'm fine. That's a trick question." Cause it is.

Tomorrow morning I have an appt with my Oncologist and provided my labs come back favorably, I should be able to have chemo on Tuesday. I talked to Jennifer, my nurse, on Thursday and explained that I really would like to go back to Tuesday if I can. She said that shouldn't be a problem if I have good labs. So Dr. George just needs to sign off on it and I am good to go. I got the Neulasta shot this last round, so I am thinking positively that my blood counts are good and Tuesday is a go. Jackson will be with the Sray's for a few days while I do chemo round five.

While I am not looking forward to another round of chemo, I am not as scared this time. Since last chemo-day wasn't the nightmare of round 3 with the Phenergan and the shakes and jerks and miserableness, I am not as anxious. I know that I will be sick and feel crappy, but the Unisom/B6 combo eases it some and the Ativan provides much-needed sleep. It isn't fun, but I have a handle on it now. Two more to go.

Good Days

I have had a good several days health-wise and I was simply too lazy to blog. But after several comments and a phone call from readers (and Dad) who feared I was either doing badly or fell off a cliff, I figured I better get my butt in gear and post something.

So let's see. What have I been up to since Saturday? Sunday, I don't remember right off hand. Oh yes, the bush! David's parents came over and helped us cut down the massive pampas grass plant that has taken over our side yard to the point the neighbor asked us to do something about it. This monster took over an hour to cut down and then 3 1/2 more to pick up the cuttings and bag them. I kick myself now for not taking before/after shots of this thing, cause you can't imagine what a major pain in the ass it was. Thanks so much to Lou and Susanne (who weeded and mulched our front bed) for their awesome help in the yard. David and I are not yard people and it takes an 8 foot behemoth killing the neighbor's bush to get us to work outside. I say us as in we, the royal we, cause I stayed inside cooking dinner and resting while the Sray gang worked outside. I was still a bit run-down to be of much assistance.

Sunday evening Andrea' came over and stayed the night since she was off on Monday for Columbus Day. She works for Spaniards so is it any wonder she gets Columbus day off? I think not. We had a good time just talking and catching up and flipping channels. It is nice to have best friend time. I need more of it and would demand more, but Andrea is directing a show that opens next weekend and is so crazy busy she hardly has time to eat and sleep. But I am putting this down for the record, Andrea', I don't care if you bring your laundry over, find me some time and pencil me in. I'll feed you, come on, you know you want to come over again...I'll get you sometime...

Monday morning Jackson was 'rescued' by my Mom for the day. She told us she'd bring him back Tuesday morning so that Andrea' and I could have the day together. It was nice. We got lunch then headed to HEB for gumbo fixins. Andrea' is the queen of gumbo and we spent the whole afternoon in the kitchen making a huge pot of gumbo just like her grandma and great grandma taught her. Louisiana ladies, gotta love em.


That evening David and I, at a loss as to what to do with our childless selves, headed to Ikea and the new outlet mall to poke around. The manic spending habits that I have developed since being diagnosed with cancer have waned a bit. I no longer feel the driving need for new clothes or new shoes or housewares. The need has been steadily fed this summer and even my kitchen, whose windows have been naked of curtains for the four years we have lived here, now sport window valances - tab top, navy blue, Target.

At Ikea, in the as is section we like to frequent, David and I found a big canvas print of Audrey Hepburn that we liked. And at the outlet mall we each found a pair of shoes. He needed and new pair of walking shoes. I just found a cute pair that will be good with my new fall clothes. I guess my shopping demon remains a bit hungry. I need to cut it out before I get broke.


Course, now we have a problem with the Audrey pic. Jackson is scared of it. When he came home Tuesday morning, I was still in bed. Mom let herself in and Jackson came running into my room to climb into bed with me. He barely got himself onto the bed before he froze and started telling me to "take it down, take it down." It hit me immediately that this picture is exactly the kind of thing that freaks him out. A great big face where one shouldn't be. Toys with faces freak him out, stuffed animals, toys that talk. Dolls. He just thinks they are weird and refuses to have anything to do with them. We have tried having him touch the picture and point out her eyes, ears, hands, nose, etc. But he still hates it and doesn't want to play on our bed anymore. It has been a tradition that he gets thrown naked on our big bed after his bath in 'mommy's tub' every night. He giggles and rolls and crawls around the bed and daddy catches him and dries him with the towel. Well, Audrey has spoiled the ritual for him. Not sure if he will get used to it or if we will have to take her down. I can't have my son be scared of my room. I want him to feel happy and safe in my room, never scared. Sigh. Poor Audrey, so beautiful, but I fear her days are numbered.


I worked yesterday and today. When we pulled into the square in Georgetown, Jackson all the sudden realized where we were and started saying, "No, no, no, no." He has never done that before; acted like he didn't want to go to the theatre. And when we got there he would not take more than one step into the lobby and started fussing and crying. He clearly did not want to be at work. I was disappointed that he didn't greet the Habitat guys with delight as he used to. It took about half an hour before he calmed down and re-acclimated. He napped well after that and today he was totally normal as we went to work. He was happy to be there and happy to see people and took his nap as usual. Guess he just thought maybe we were going somewhere else yesterday. Like Grammy's house or the Cancer Center where he gets candy and gets to see the fish. I dunno. I was very happy he was back in the rhythm today. I took a couple of pics of him in the theatre and on the set poking around.


Work itself was good; busy for opening weekend of Cats. The set is looking better each day and the publicity shots show a professional-looking cast and production. I think it is going to be a good one. I am excited for the opening. And I just now got a babysitter for Friday night! I had all but resigned myself to staying home cause all my usual sitters are busy. But Mary, my Dad's lady, heard from him that we were wanting to go out, and she offered to watch Jackson. So we get to go to the opening night pre-show gala and see the show and maybe even hang out a bit afterward. Yippee! I have date night! Thanks Mary, you are awesome.

On the upswing

Today I woke up shaky and weak, but not in much pain. And throughout the morning I felt stronger and better. Yay!

We managed a huge grocery run without incident. Daddy had to skulk out a yellow race car cart and run get it for Jackson before it was gone. Once seated in his coveted yellow car, clutching his HEB balloon, the boy behaved pretty darn well and we were able to shop easily.

Toward the end of the trip he spotted a package of 6 cars that was irresistible to him. About the size of cell phone, these cars were bigger than the regular Hot Wheels he is used to and he looked at them with such joy that we decided to get them. Even after our previous steadfast opinion that he has too many damned cars and doesn't need new cars every time we go somewhere or every time a Grandparent visits.

But these cars are different than what he has. David and I stood there discussing it for five minutes. What are the reasons not to buy them? He has enough cars. He is spoiled. He has to learn no. They are $7.00. He only really wants the blue one the other 5 are a waste. Why get them? They are bigger than the Hot Wheels. He has obvious joy for them. We don't want to deal with a tantrum at lunch/nap time in the store. They are only $7.00. He really wants that blue car. He held the package in the cart with reverence and kept saying "neeewww carrrss" like a boy spellbound. We bought the cars.

Sigh. Parenting is hard. I still don't know if we should have bought the cars. They have kept his attention for the rest of the day. As expected, he cherishes the blue car and it has been one of the two he has had with him all day. And he took it to bed with him. I just don't know how you are supposed to not spoil your kid with toys and candy when it is so darn prevalent and right there at the stinking check-out stand, which is another topic altogether. In the end David and I have pretty much decided that the rule is no more Hot Wheels. Unless they are really special. Or he really wants them and they are cheap. Or we are just pushovers. Sigh. In the end, I think we have decided nothing.

I was feeling well enough this afternoon to attend the baby shower of an old theatre friend, Tara. It was good to put on a little make-up and nice clothes and drive myself somewhere. I haven't driven since Monday two weeks ago. I had a really good time talking to ladies I hadn't seen in a while. Tara looks great 3 weeks before her due date. She has the glow for sure; note her rosy cheeks in the pic. Jackson came with me and I was afraid it wasn't going to go well since he didn't nap well today and was seriously pissy in the car on the way.

But we got to the party and he was wonderful. When at social gatherings, my son tends to be an angel. He is a social butterfly and an absolute charmer. He has no concept of strangers and he loves to flirt and play with anyone who has an open smile and takes an interest. He is a performer, I think. He turns on sometimes and there is no stopping him. He charmed the pants off of every lady there and had them all commenting on how good he is. I did tell them that he is a normal two-year-old and has all the expected behaviors at times. But then, I really do think that he is an unusually happy guy and when not hungry or too tired, he just tends to get along in the world. I was tremendously proud of him. He is my boy. He says please and thank you and isn't wild and out of control. I love him so much and am very proud to be his mother, even when I have to drag him screaming out of Walgreen's cause I didn't buy him a balloon.

Tracie, at the party, made an interesting observation about Jackson that I hadn't heard before. She said he moves like a cat. She was watching him wind in and out around the guests and the food table and noted that he didn't bump into things or knock things over and moved in such a way as to avoid contact with objects. Sleek like a cat. Interesting. I'll have to watch for that. But I do know that he walks lithely on his tippy-toes and doesn't spill things terribly often and drinks well out of a cup for a toddler. Could it be? Do you think? No, that would be too much to ask...but...is it possible that Jackson has balance? That illusive quality that has ruined many a dance audition for his Mom and Dad? Cause his Dad and I have flat feet and no balance. Has Jackson overcome his DNA and now holds claim to grace and balance? I can only hope and watch.

I was googling around last night about the Neulasta shot and the subsequent bone pain. I wanted to read some cancer message boards and see what others were saying and doing about the pain. It was fun and therapeutic. I found some fun message threads where cancer patients bitched to each other about the pain. Fun, I say, because to laugh at this pain is great. Something that made me laugh were comments such as this one:

"On a side note I felt I had to say something about neulasta's web site...is anyone else royally annoyed at the marketing campaign for neulasta? The commercial / web site / info brochure says that most patients complain of "mild bone pain" that can be treated with Tylenol...I found this for me to be an egregious understatement to the point of being criminal."

I quote that post because I have been saying the same thing. Mild to moderate bone pain, my ass. I went through labor and childbirth drug free and literally without complaint. And I thought that hurt. The bone pain is equivalent. And this post set off a string of complaints from cancer patients that included everyone's personal description of the "mild bone pain." Such as these jewels:

"When I first got neulasta I had so much pain it felt like every bone in my legs from my ankle to my hip was being crushed by an elephant, a screwdriver driven into the base of my spine, and the jaws of life squeezing my sides...all at once."

"wisemoose, have to agree with you about the comment "minor bone pain" what a crock that was. minor bone pain my a** ;-("

"Mild bone pain? When i got my first one, i thought i had a Slipped disc!"

"To say that one experiences mild bone pain from these injections is like saying that a Bone Marrow Biopsy is "slightly" uncomfortable."

"Minor pain!" HA! for at least 3 days after each, I felt like I'd been hit by a Mack truck! It was simply excruciating -- and I have a lifelong history of handling pain really well, too! I'm here to say that Tylenol sure didn't do the trick for me!"

I read the posts and had a good time laughing and commiserating with people on a long-dead message thread. Is it odd that reading other people's complaints made me laugh and feel better? I guess it just felt like a great bitch session with people who knew exactly what I was feeling. Pain, yes, but frustration too. Cause if you read the Neulasta web sight, it does makes the bone pain sound like a rare complaint that can simply be handled with Tylenol. Are you fricken kidding me? I am the toughest person I know when it comes to pain and it lays me out on the couch for days. Tylenol my ass. It just feels good to say that and read a forum of others who don't enjoy the 'mild discomforts' of bone pain either.

Happily, the worst of that is over for another 10 days or so and I am ready to enjoy my good health till the chemo-fairy comes for me again.

Endurance

Today has been an exercise in endurance. Exactly how long can I lay on the couch with very painful bones and a nauseous stomach from the pain meds? Pretty nearly 13 hours so far. Ok, I was in the bed for a few hours. And lying on the bathroom floor for 10 minute stretches occasionally.

There is something surreal about lying in a cold sweat on your bathroom floor while your two-year-old cries and bangs to get in, listening to your husband on a conference call in the next room talking about some data types. And all I could think was "I am so happy the housekeeper came yesterday, this floor is really clean."

I don't mean to mislead you. I am doing fine. I am miserable. But really, I'm fine. I am hurting pretty good and the pain meds make me sick to my stomach and I am really, really ready for this round to be over already. But I am no more miserable than a cancer patient should expect to be. The chemo is doing its job and knocking back the cancer, I am not fighting a losing battle. Shit, I am not fighting a battle at all. There is no battle, I am the winner. Hands down, muthafuka, I am the winner.

But I have at least another day of miserableness. Then the sun will start to shine in my world again and perhaps I will get out of my pajamas for the first time since...since...I actually don't remember. Monday? Tuesday? Doesn't matter, does it?

Jackson is the sweetest boy. He doesn't like it when I am in my bed. He wants me to come out on the couch. If I try to lay in bed and read or sleep he comes in and stands there at my face and tells me "mama get up" and he turns my lamp on and off until I relent and come out. He doesn't pay a whole lot of attention to me once I am on the couch. He just wants me to be there. Sweet boy.

Much Better

It is amazing how much better I feel today just from not having to take 5 tablets of Prednisone first thing in the morning. My body doesn't feel so full and tight, like my insides are too much for my skin to hold in. Much less puffy, already. It may be mental, at least partly, but whatever it is, it's welcome.

My bones have started hurting right on schedule, but that is almost comforting. Predictability is comforting. I got chemo on Thursday instead of Tuesday so I expected the bone pain after lunch today instead of Monday. And right on schedule, it has arrived. But with the mental relief of no handful of steroids this morning, I am good. My Dad called it earlier this week. He said we both deal really well with physical pain, it's the mental crap and the out of control crap we can't abide. And he is right. I know that the next few days will be full of bone pain, but I am ok with that. I prefer it to the last week of the emotional roller coaster of chemo and Prednisone.

I am beginning to feel my positive attitude returning. This is becoming more emotionally difficult than I thought it would be. Being sick and focused on that and so out of control for so many weeks has taken a toll. I am tired of it. But giving myself permission to be tired of it helps. Who wouldn't be tired of this? My life has been taken out of my control and put on hold for this awful medical treatment than no one in their right mind would enjoy and I am beating myself up for getting a little down? It is laughable. And today, coming out of the haze of round four of chemo-hell, I am feeling able to chuckle at the madness a little bit.

And about the amazing fluff of whatever it is growing on my head. Sprouts of a hair-like substance. Almost colorless. Soft. Dare I say gross? I don't like the look or the feel of it. But it is interesting. My head is growing something during chemo treatments. It is not giving up, not giving in to it. Determined to sprout some kind of covering as fall and winter approach us. I can't say it is attractive. But it is something.

Retreat

After a bit of a rough chemo week and weekend, I am taking a couple of days retreat to Andice, home of Mom, the nurse, and the super Grandmas. In Andice where my cell phone doesn't work most of the time and they only have dial-up. But lots of trees and a whole lotta nobody else around. Exactly what I need. I will post when I am less crazy and more rested. Or when I run out of books to read. Love to all!