AM I CRAZY? OR JUST PARANOID? OR BOTH?

Sunday, Noon, Update

Well, if someone had just TOLD me that all I had to do to get Kendrie sprung from the hospital was have a mini nervous breakdown, ramble in public about my fear of a relapse and dirty socks, and call Blaine in for a night of reinforcement .... I could have done that a week ago!! :)

The oncologist came in this morning to let them know she could come home --- Blaine promptly called me on the cell phone and made the doctor talk to me (smart man, my husband.) Her counts are up a wee, itty bitty bit, and she hasn't had any more leg pain or fever, so home it is. We'll check counts at least once or twice this week, and have clinic scheduled for the 13th. Any fevers or pain in the meantime and it's back to the ER we go. But I have great faith that won't happen. (and if it does, I will be much better prepared this time, with shampoo and a blow dryer, ha!)

Well, if you'll excuse me, I have hamburgers and watermelon and sparklers to buy. (Not really about the sparklers .... I am a firefighters daughter and have an inborn fear of firecrackers, but we'll still be celebrating this 4th of July, if for no other reason than being back as a family again.) Thanks again for humoring my ranting this past week .... have I mentioned how much I adore all of my Caringbridge family?? :)

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165 Days to Go

I had no idea the damage that eight straight days of filtered air, fluorescent lighting, hospital cafeteria food and constantly-interrupted sleep could do to a person. Specifically, to me. I haven’t looked this bad since my last scrapbooking retreat, when my friends and I cloistered ourselves indoors with 80’s music, bottomless gallons of soda and vats of peanut M&Ms for 72 straight hours. And that was for FUN.

When I took Kendrie to the Emergency Room at Childrens Hospital in Atlanta last Friday night, I certainly suspected we would be kept overnight. Possibly even two nights. So, being the organized, prepared Mom that I am, I packed an overnight bag. A single overnight bag for the two of us. I packed us each a change of clothes and threw in a few snacks, since you never know about those hospital cafeterias and vending machines.

And as you know, I wound up staying eight nights and days. I am home now, having traded off with Blaine for a day. Kendrie, of course, is still in the hospital. I had to come home and make drastic restitution to my overnight bag. Here are some of the things it did NOT contain:

Clean socks for me.

Make-up, face cleanser, or moisturizer of any kind.

Shampoo, conditioner, blow dryer, or curling iron.

Tweezers for plucking the gray hairs that grow out of my head at an alarming rate.

A mirror (perhaps in hind-sight that is a good thing.)

Enough clothes or pajamas for either of us.

Any crafts or activities, except for the portable DVD player (more on that later). Thanks so much to Regina and Madie for visiting and rescuing us in the crafts department!

All I can say is thank goodness for the washer and dryer available to families on the Oncology Floor, and for the deodorant and toothbrush I *did* think to put in, otherwise the entire nursing staff would have been calling me "Pigpen" and commenting on the cloud of filth and dust that swirled around me when I walked the halls. As it was, I wore the same pair of socks for an entire week and gave up caring if my hair was brushed when I walked to the vending machines.

I realize in the world of pediatric oncology, eight days is a drop in the bucket. Check out Victor, who has been in the hospital for two months since his transplant. Now *that's* a long time. And I’ll be the first to tell you that the facilities at Children’s Atlanta are more than decent. They offer private rooms with private restrooms, so even though the tubs are tiny and the towels are thin and apparently the laundry staff has never heard of fabric softener, at least I was able to take quick showers in peace. Each room has a small sofa that folds out to a small bed, so at least I wasn’t sleeping in a chair, or worse, trying to fit my big butt in Kendrie’s bed with her (except for the times each day I *chose* to do that for snuggling!) Children’s also allows parents to order room-service trays from the cafeteria to be delivered to the room, so you don’t have to leave to go to the cafeteria if you don’t want, unless you’re really jonesing for a Twix or Snick ….. er, I mean, a healthy apple or banana.

So when I got in my car tonight to drive home and looked at my reflection in the rear view mirror, I had to admit the wan, sallow, stressed-looking face staring back at me couldn’t be blamed completely on the amenities, or on the fact I had gone eight days without sunshine or fresh air. This is the face of worry. And this is why cancer sucks.

Honestly, really, truly ….. leukemia hasn’t been that bad. (Easy for me to say, I know.) But overall, Kendrie has done very well with treatment. No side effects too drastic or challenging and she’s plugged right along so far. We managed to go twenty months dodging the inpatient bullet, something that amazed all the doctors and nurses this past week. And maybe it’s just that I’m unaccustomed to hospital stays and the emotions and stress and fatigue that go along with them … but I can tell you without a doubt that last night (actually, early this morning) I spent 120 of the most frightening moments I have had since Kendrie was diagnosed. And it was a harsh reminder of why cancer sucks.

Her counts, as you know from following the past few journal entries, haven’t bounced back as quickly as we would like. Or even as quickly as “normal” (whatever the heck “normal” is in this insane world.) But like the oncologist said, every kid is different and we’re still no where near the world record for longest time with low counts. Every hospital stay, every bug, every illness, can be different. Maybe this is just a particularly harsh virus. Maybe her body is simply tired from twenty months of chemotherapy, especially considering she not only has never had a break from chemo, but has been on 125 percent for months! Maybe the reason her counts aren’t going up is because what few white cells she IS producing are going straight to the sores on her tongue and heiney, healing those. Whatever. I’m perfectly fine with all those excuses.

But last night she was pre-medicated at 2:45 am (don’t even ask) to finally receive her blood transfusion. She hadn’t been to bed yet (again, don’t ask) and I just knew the benedryl and tylenol she received would knock her completely out. Instead, just a few minutes later, she started tossing and turning. And complaining of leg pains. Then complaining a little louder. Until, fifteen minutes later, she was literally screaming about the pain in her legs, writhing in the bed and begging me to make it stop. We tried hot packs, massage, even morphine. Nothing touched the pain. Do you know how difficult it is to be calm and comforting on the outside for your child, while your insides are frantic, wondering why this is happening and fearing the worst?

Logically, I knew the leg pain could be caused by any number of things: maybe the bone marrow was finally kicking in and starting to produce cells-- that can be painful. Maybe the week off chemo precipitated a growth spurt-- that can be painful. Maybe it was a reaction to the benedryl and tylenol, although technically they should have *helped* with the pain.

Of course, cancer parents everywhere know where my mind was going. What are the primary symptoms at the time of almost every kid’s diagnosis? Bone pain, low counts, and fevers. After listening to her scream and cry until 4am, feeling powerless to do anything about it, and then lying awake in bed with her, rubbing her legs until almost 5am and trying not to cry in front of her the whole time, you can guess exactly where my imagination was racing. I was tired, I was stressed, I was terrified. When the doctor came in to talk to me this morning, I asked about a bone marrow aspiration to rule out relapse and promptly burst into tears. (Maybe I needed more than three hours sleep?)

In the light of the day --- even the fluorescent light of the hospital room --- I know I was over-reacting. Most likely. Probably.

Kendrie woke up in a good mood, ate well today, and never complained of any kind of leg or bone pain. Her counts? Still not up. But the oncologist told me they are not yet worried. Promised me that if they *got* worried, they would tell us. They are still waving the “maybe you can go home tomorrow, depending on what her counts look like” flag in our faces …. Taunting us.

So you see, that is the “sucks” part in a nutshell. That is the reason I can’t blame the lines on my face on lack of moisturizer, the gray hairs on my head on lack of tweezers. The scary fact that a child can be coasting along, not a complication in sight, and even something as minor as a virus can not only land you in the hospital, but force your mind to think thoughts better left buried. Why aren’t her counts coming up? Why did her legs hurt? Why can’t I just take a deep breath and have faith that a week from now I will look back and roll my eyes at myself for over-reacting that way?

There is no relaxing. Ever. Even when things are going well, in the back of your mind you think dark thoughts and are constantly on the watch for signs and symptoms of something wrong. Then, when they show up, you spend the better part of the early-morning hours making really irrational bargains with God.

I hate this. I was the mom who let her young children climb on all the park equipment (within reason) and didn’t freak out – too much -- when they ate bird poop off the playground. They wear bike helmets to ward off head injury, they ride in well-designed and properly installed car seats, and everyone is immunized and loved beyond measure. And still I can’t protect her from this. Sitting back, waiting for her counts to come up. Waiting to be sure the leg pain is nothing more than … well …. leg pain. Last night, lying with her in bed, holding the hot packs on her legs, I had the frantic thought that I needed a crystal ball so I could look into the future, see our family intact and reassure myself that everything would turn out ok. Then a cold fear settled into my stomach and chest as I thought ….. “If you really had the crystal ball, would you look? Or would you be too frightened of what you might (not) see?”

Crazy? Paranoid? You make the call.

Now, to address those of you who have so gallantly offered to bring or mail us some DVDs so I can get a break from Cheaper by the Dozen --- hey, thanks! Those are nice offers, but I actually brought about a dozen movies. She is watching the same movie over and over again by CHOICE! Although I put my foot down the other day and insisted she watch something else. I just couldn’t take it anymore. So we watched Home Alone 3, three times in a row. Maybe I should have kept my mouth shut? :) That’s ok … Blaine is at the hospital now and he can take a turn with movie duty.

And as far as the guestbook entry from Cristin from Virginia, for pointing out all the mistakes in Cheaper by the Dozen …. I don’t know whether to thank you or curse you, since now I will have to watch the movie again just to find the mistakes, ha!!! (I had already noticed the sunglasses mistake myself. Truly, a sign that I’ve seen the movie too many times!) :)

Well, thanks for letting me ramble. I hope I don’t seem irrational or melodramatic. I guess it’s what lack of sleep, and lack of control in a terrifying situation, can do to a person. I’m going to go take a long hot shower in MY bathroom, then have a long, deep sleep in MY bedroom, and spend tomorrow with my two oldest children who I have missed beyond measure this week. I’m sure by tomorrow morning my late-night fears will seem even more remote. If nothing else, the break from the movie should be good for my mental health. But thanks for listening, anyway. Is it sick that an online journal can be this cathartic? (Don't answer that.) :)

Kristie

PS Did you know that it is apparently possible, simply by getting up and down out of a recliner twenty times a day to get things for a small child, to pull a muscle in your left butt cheek? Truly, I am astounded by my own athletic ability.

PSS Happy 4th of July to everyone!