Repeating Myself

If you've been following along on this blog, or even on Kendrie's Caringbridge site from the earlier days, you probably suspected this journal entry was coming. For those of you who have never read it before, I'm simply re-posting a Caringbridge journal entry that I originally typed on Thanksgiving of 2003. It had been approximately six weeks since Kendrie had been diagnosed with leukemia, and this post was really the first time that I felt I "connected" with people. While I don't think it's Pulitzer Prize material or anything necessarily worthy of repeating for literary sake, it *does* serve as a very good reminder to me that most of the time nowadays, I need to pull my head out of my ass and remember when I really *did* have something to feel upset about.

Thanks for letting me repeat it again ....
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Friday, November 28, 2003 0:21 AM CST
KRISTIE'S PATHETIC, LAME, COMPLETELY RIDICULOUS CANCER/THANKSGIVING ANALOGY:

First of all, I have to say how much we appreciate those of you who check on this web site and take the time to sign the guestbook. Several of you, and some who have e-mailed me privately, have made the comment you are glad to see me (try to!) put a humorous spin on things, and that you’re glad to know we’re coping so well. To be honest, I have no idea if we’re coping well at all. I just make it a point to do my crying and worrying and stressing in private, and put on a happy face, USUALLY, in public. But today, in this journal entry, I’m going to be a little more honest about things and the way I am really feeling. I’m not sure what has brought about this pathetic moment of self-introspection, but feel the need to get some things off my chest. If you don’t want to hear it, exit now, it won’t hurt my feelings. I promise to kick myself in the butt and be back to normal tomorrow. (No, I will not be taking volunteers for the chance to kick me, so all of you just put your hands down now. No, no, do NOT form a line!)

I think it’s the whole Thanksgiving holiday. Thanksgiving. Giving thanks. Something I’ve found pretty easy to do most years, and took for granted pretty much every year up until now. Sure, I know a little bit about worrying about the health of family members. Who doesn’t? My dad has muscular dystrophy. My mother-in-law is on dialysis for renal failure. My husband had two major surgeries to get rid of a cancerous tumor six months ago, and had a nice chunk of the inside of his head removed at the same time --- reconstruction still a work in progress. So I thought I was a veteran at worrying, but always managed to give thanks irregardless. WRONG. Nothing prepares you for the fear and worry when your child is ill. More than ill. Ill with a disease that, even in this day and age, still claims innocent victims. And now you want me to give thanks????? So here’s the lame analogy I came up with:

Imagine every year for Thanksgiving that you and your family go to a wonderful all-you-can-eat buffet. The food is always great and you look forward to getting the same delicious meal, year after year. So this year, you give your standard order to the waitress: an appetizer of “love”, a “caring” salad, the side dishes, “thoughtfulness” “compassion” and “laughter” and a big, juicy entrée of “good health and happiness for everyone”. The waitress brings you everything you asked for but the entrée. Instead, in front of you on the table, she places a big, fat crap sandwich. And the conversation goes a little something like this:

You: “excuse me, I didn’t order this crap sandwich”

Waitress: “house special. You got it without asking”

You: “but I don’t want a crap sandwich. I want good health and happiness for everyone.”

Waitress: “well, you got a crap sandwich.”

You (getting upset) “well take it back and give me what I asked for instead!”

Waitress points to a sign that says “Absolutely NO substitutions”

You say adamantly: “there is positively no way I am going to be able to choke down this crap sandwich and I think it’s really unfair for you to expect me to”

And the waitress replies “hey, look. You’ve still got love, caring, thoughtfulness, compassion and laughter, so try to appreciate those. Oh, I almost forgot, here’s your condiment tray for the crap sandwich. You also get big overflowing bowls of fear, worry, anger, guilt and resentment. Bon Appetit!”

And so you’re looking around the restaurant, feeling really grumpy about your crap sandwich, and you realize that there are a lot more people with crap sandwiches than you ever thought possible. And from the looks on their faces, none of them ordered them, either. Then you see a couple of tables with really, really big, Dagwood-sized crap sandwiches and you summon the waitress again. “Excuse me, why are their crap sandwiches so big?” And she explains that those people are facing situations even worse than yours. Their kids haven’t responded well to treatment, have had cancer relapses, or worse yet, died. And you start to think maybe your crap sandwich isn’t so bad after all. Maybe you should keep your big mouth shut, choke it down, and be glad when it’s all gone and everyone is well again. And then, right then, your waitress reminds you of one last thing: “Management reserves the right to serve you another, bigger crap sandwich, anytime they want”

That’s a little how I feel right now at Thanksgiving, living in this surreal world of leukemia. I know there are other people who are having a rougher time of things than we are. I know Kendrie is responding well to her chemotherapy. She is in remission and God willing, will stay there. But I am having a very difficult time Giving Thanks for this crap sandwich, and I’m unbelievably resentful that there are more crap sandwiches being made in the kitchen even as I type this, and terrified more than you can possibly know that our family might be due another platter.

I resent that “in remission” doesn’t mean cured. It doesn’t mean anywhere near cured. It means cured for right now. Today. Kendrie could relapse tomorrow; next week; next month; ten years from now. When are we ever supposed to relax? When will this knot in my stomach go away? It’s the last worry on my mind at night and the first thought in my head when I awake each morning.

I resent that for the rest of her (my) life, every time she complains of an ache or a pain or runs a fever, I will fear that the cancer has returned. Prognosis is no where near as good for kids who have relapsed. Dear God, don’t let her relapse.

I resent that I can no longer brush her forehead or cheek without covertly checking for signs of a fever.

I resent that despite my best intentions, my other two kids are getting the short end. There are only so many hours in a day.

I resent that I am so tired, and then feel frustrated with Kendrie for being the source of that, then feel ashamed of my frustration.

I resent that I saw Kellen had bruises on his shins tonight and for a split second, all I could think was “Dear God, not two of them.” It does happen; two kids in one family. What family could endure that? The ones that have to, I guess.

And that’s my point --- to all of you who say, “I don’t know how you do it” or “I don’t think I could do it” Well, of course you could. Do we have any choice? We do it because to do otherwise would be to shortchange Kendrie, and all the kids with cancer, which simply isn’t an option. And I try to do it with a little bit of grace and humor and optimism because quite frankly, if I wrote too many journal entries like this, I would depress the shit out of everyone, myself included. In fact, I don’t know what I hope to accomplish with this one, except maybe trying to explain that underneath the jokes and “looking on the bright side” is a terror so real that sometimes I lie in bed at night and can’t breathe. And I’m not trying to be overly dramatic. I’m trying to be honest. Leukemia kills children. Yes, the “cure” rate is 85% (For ALL, which is what Kendrie has. Other kinds have lower rates than that.) That means 15% still die up front, and the other 85% ONLY have to worry about a relapse for the rest of their life. I’m feeling a little sick to my stomach just typing all this, so maybe I should move on.

There are some things I am truly grateful for:

I am grateful that it looks like a CVS pharmacy exploded in my kitchen. That means there are drugs that can be used in an attempt to cure my child and beat leukemia.

I am grateful Kendrie has tolerated the treatment so well so far. I am grateful for remission.

I am grateful my husband has a good job with good insurance and that so far, finances are not one more worry to add into the rest of this.

I am grateful for the friends and family, both near and far, who have supported us so kindly, and who will read through this awful journal entry and love me anyway.

I am grateful that when Kendrie was diagnosed, my mother was able to drop everything to come to Georgia and be with us. I am grateful that my dad and my sister so willingly held down the fort in her absence.

I am grateful my husband had cancer this spring. Had he not, he wouldn’t have been placed on the “Do Not Deploy” list and he would have been in Sarejavo when Kendrie was diagnosed. As hard as that week was, I am grateful we were able to face it as a family.

I can’t come up with a reason to be grateful that Kendrie is going bald, but I’ll work on it.

I am grateful that my crap sandwich isn’t any bigger than it is.