Thursday, November 27, 2008

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.

25 comments:

jeri from hawaii said...

Kristie,

Your Thanksgiving entry is just as powerful today as it was when I first read it. As always, you help me to keep things in perspective and to be grateful for the blessings I've been given.

With warmest aloha,
Jeri

Anonymous said...

Kristie,
OMG, I can't believe it has been over five years since I started following your (Kendrie's) site! I remember reading this in the original post and thinking how very true this is. I think about this always when I have troubles and think they are "Big Mac" size, when in actuality my crap sandwich is usually the size of a "Krystal" burger! Thank you for once again helping me to see that the trials that I experience are nothing compared to what other people go through!
Always Praying for your family!
~Debbie~
Hoover, AL

Anonymous said...

I've shared your "crap sandwich" analogy before and it's so perfectly worded. You have a gift of speaking through word pictures. Very clearly. It'll be wonderful to hear when Blaine is healed and I'm so thankful that Kendrie is doing so amazingly well and hopefully the crap sandwich will simply have been fertilizer for an even better life than you ever would have imagined.

We all DO have much to be thankful for. And one of those things is having the opportunity to share each others' lives. Thank you for your blog and for being very open and REAL.

Claire in Indiana

Stacia said...

Kristie, thanks so much for sharing that post again. I haven't been reading your blog all that long and it was good to get a look at it's earlier years.
Your family is truly amazing and I appriciate the way you just tell it like it is and open eyes and hearts with your blog.

Marcia said...

It was good to read your entry again. I have had my share of crap sandwiches, and they were the big ones that didn't end so well. My sister's 6 year old son lost his battle with ALL in 1992, and 2 of my kiddos have gone to be with him since that time. My father died a year after my second child, to a cancer that was never formally diagnosed. I am in no way thankful for those massive crap sandwiches, but so very grateful for every minute of every day with my loved ones. I am also very thankful to be able to read this again, all these years later, and know that Kendrie is such a strong, healthy kid! I am sure that I will be reading it again, hopefully in the near future, with the add ons about Blaine being totally cancer free and healthy!

Anonymous said...

Your crap sandwich analogy is so perfectly fitting. You have a wonderful ability to put things into perspective for all who read.
Thanks for sharing again.
Mel

Stephanie D. said...

Thanks for the reminder of how grateful we should all really be.....

Funny enough, I remember that post and have since used the "crap sandwich" analysis many times.

Happy T Day to the Escoe family from the Deal family.

May you continue to have fair winds and following seas!

~Stephanie

M, Ms. R, Mom, Auntie M, Marey said...

.....and I borrowed that for my Relay for Life speech in 2005....and people still come up to me on the street and comment about it....but one funny thing- during the speech my friend thought I said, "Crab" Sandwich and she couldn't figure out why everyone was laughing!

Happy Day After TG!

Anonymous said...

I wish I had something profound or humorous to add, but I don't. Thank you for repeating that. A family here that I know through school just lost their 14 year old to cancer a month ago. Walking through childhood cancer with you and some other "friends" on CB has made me so much more aware and I thank you for that awareness.

Dixie

JoAnn said...

Kristi,
The "crap sandwich" post is as brilliant today as it was when you first wrote it. I love this analogy and I go back to it many times when I need a kick in the butt! It is so well stated and so spot on! It doesn't mean that we all don't have troubles- but just a good reminder to keep things in perspective. Thanks for yet another great post!

Marge said...

Thankful for people like you who powerfully remind people like me who are sooooo blessed to have their health. Praying blessings on your whole family, especially Blaine and Kendrie.

Marge

Monica H said...

What a perfect analogy...will you pass the ketchup?

Cindi said...

Thank you for reposting that Thanksgiving message. I think that we all tend to get complacent about things in our lives, and begin to take the status quo for normal. Every once in a while, we get a big shake-up and are jarred back to reality.

As a cancer survivor I tend to try to never take anything for granted and appreciate all that I have. I've become more of an optimist, rather than a pessimist. But like many others, need a little reminder of this. You provided that for me.

Thank you.

Anonymous said...

Thanks for repeating that post. It was well worded and appreciated then and again today. My husband's parents both died from cancer. His mom just two days before Thanksgiving. Our son finished treatment for ALL just months before Kendrie. You worded the analogy perfectly. It means a lot to see this analogy from someone who is humorous and usually positive.
Bless you all. May cancer leave your house and your crap sandwiches be few and far between. They've fertilized your life enough.

Heather L. said...

Kristie,
That was worth repeating. While my daughter hasn't had cancer, she was born with some issues... the scariest to me being epilepsy. It always made me wonder what "those" people would do had they had my daughter... give her away? Tell her too bad, I can't deal with it? My crap sandwich may not be what I ordered, but I will take this over death anyday!

Thanks for reminding us!

Heather L.

Tina S said...

Ah..The Crap Sandwich. Your analogy still lives on on ALL-Kids. You're right, it does make you stop and think about life now and what has happened in the past. I pray the "crap sandwich" stays away from everyone.

1dreamr said...

Thank you so much for posting this again. Natalie pointed me in this direction yesterday. I won't go into the reasons why, but suffice to say that I really needed this post *right now* so I'm extremely thankful that you decided to repeat yourself. :-) Many hugs to you and your famly.

Thankful Paul said...

Hello

Anonymous said...

This was the CB entry that led me to you 5 years ago. Gooch's mom recommended it (along with Zack Finestone's site) on their CB page. I've been a faithful follower ever since.

It's truly brilliant and I thank you for running it again.

Debbie
Largo, FL

Katie said...

I've read that Crap Sandwich entry more times over the last 5 years than I can count, and it hits home for me every single time.

Thanks for posting it. :)

Vicki said...

Why does it always take someone else's "crap sandwich" to realize how thankful we really are for the things we have in life. I think it's great the way you laid out your emotions. I always love to hear your humor but when that's all we see we're not really seeing the whole picture. It was a good reminder for all of us. All the "big" things I have to worry about seem so trivial when you see all the other "crap sandwiches" others have been handed. Thanks for you moving entry.

Karalyn said...

Yes, definitely worth repeating. Wow I can't believe I have been following Kendrie's story for so long. I am SO glad she is where she is today. Keeping your family in my thougts and prayers.

Anonymous said...

Amazing. You still have the fight in you with all of the "sides".
Sending good thoughts.
mary cron schulman
crosslake mn/san diego ca

Dianna in Louisiana said...

I am extremely thankful that I have been a witness to Kendrie's and your family's journey. Thank so so very much for sharing it. Really, what a blessing it has been.

Praying for Blaine and your family today.

Miscellaneous From Missy said...

I am thankful for your blog.