So here we are, finished with day 4 of Delayed Intensification. Except for one glaring exception, mentioned later, things are going just fine. Kendrie’s visit on Monday was good; spinal fluid clear (sigh of relief) and home at a reasonable hour. Thanks once again to Nadine M. for bringing us dinner (I know you’ve got to be sick of cooking for us!) Kendrie got sick from the meds for the first time, but didn’t let it slow her down. Today’s visit was ok, too; not as bad as I feared regarding the shots. I warned her ahead of time and she certainly wasn’t happy about it, but we suffered through and five minutes later she was fine again.
I’ve been giving you Kendrie’s perspective in recent journal entries, and thought today that I would give you my emotions, instead, regarding this crazy cancer world. Or maybe the world isn’t crazy, but I am. The jury is still out. Beginning last night, and all beginning with the letter “A”.
Kendrie has taken to falling asleep with Blaine and me in our bed. She loves it, we don’t, but we’re suckers the past few months. Then we just take her back to her bed once she’s asleep. So last night we’re laying there giggling, and I said something along the lines of “I would kick you out of this bed right now except I love you so much” and she said, “Do you love me?” and I laughed and said of course. Then she said, in this teeny tiny voice, “Even though I have leukemia?” and it almost took my breath away. So I said, “of course even though you have leukemia” and then she asked, “Even though I’m bald-headed?” Anguish might be too strong of a word, but it’s the closest “A” word I could come up with to describe the feeling in the pit of my stomach, that my child would even be in the situation of having to wonder these things.
Today began with Kendrie and me preparing to leave for Atlanta. She was complaining that her hands were cold (yes, even in Georgia it gets chilly enough for gloves) and I made the comment that I couldn’t find gloves this year that were small enough for her hands, but that NEXT winter, when we would be driving to Atlanta, her hands might be big enough. It was like a punch in the stomach, “oh my God, we’ll still be doing this a year from now.” And then the Part 2 of the 1-2 Punch, “and we’ll still be doing this the winter after THAT” For just a moment, there was a feeling of Abject Misery, at how much this just sucks. Just as quickly though, that was replaced with feeling Ashamed, thinking that I should count myself lucky we have this treatment to try. Thinking of the parents who have lost children to this disease, and how they would probably give anything to be still taking their kids to treatment.
At the clinic today, Kendrie had to be observed for an hour and a half after the shots, to make sure she didn’t have any reaction to the medication. We were hanging out in the playroom, painting, and all of a sudden I hear the clinic staff break into song, “For he’s a jolly good fellow”. Turns out, one of the kids at the clinic was having his last day of chemo today, and then would be officially OT (off-treatment). It’s a really huge deal, and the staff takes photos, has balloons, etc. I sat there for a minute, feeling in Awe for this boy and his family, and all they must have been through to reach this milestone. Can you even imagine the sense of Accomplishment that must come with that? And I’ll admit I felt A Little Bit Envious, wishing we were at the end of treatment, also.
Kendrie was sort of limping around the clinic, holding her thighs, and another mom looked over and said sympathetically, “did she get her Peg shots today?” I can’t tell you the sense of Affinity I felt to this woman, an Alliance of sorts, as we sat and compared stories. I have a fabulous online support group, and friends and family all over the country who care about us and are wonderful. But this was the first time I had sat down, face to face, with someone who was going through the exact same thing. It was a real pick-me-up when I needed one.
I also felt Affected as she told me about her brother who died from leukemia some 40-odd years ago. Given one shot of vincristine at the time of diagnosis and sent home with a prescription for steroids-- it makes my stomach ache to think how leukemia was a death sentence years ago, and makes me feel such immense Appreciation at how far research and treatment have come, for kids like Kendrie, who now have a fighting chance.
Then, the journey home. Let me say first of all that I feel Amazement for all the people who drive daily in the Atlanta rush hour traffic and haven’t suffered an Aneurysm, because I sure thought I was going to.
There was the feeling of Aggravation, when Kendrie informed me that NONE of the dvd’s I brought to watch in the van were “good”. Apparently, Spirit, Like Mike, and The Lion King all have issues with the heroes being either orphaned, or somehow separated from their families. Kendrie told me they were all “bad” movies for that reason and would only watch the one other movie I brought, The Sandlot. So we watched it. Four. Times. I used to really like that movie, but after the fourth time in a row, even the hysterical swimming pool scene with Squints and Wendy Pfeffercorn failed to amuse me.
Then, the Annoyance that I felt when Kendrie swore that the scrambled eggs she got at IHOP for dinner were manna from Heaven and her life would be over if she didn’t get a second helping. So, being the good mom that I am, I flag down the waitress and order another scrambled egg, only to have Kendrie take one bite and tell me she was full. I don’t think this is a cancer issue as much as it is a 4-yr old issue, but it got on my nerves just the same.
And, what day would be complete without a rousing bout of Anger. It’s probably very un-PC for me to admit that I got angry with my Cancer-kid, and DFACS will most likely show up on my doorstep tomorrow morning for putting this out in public, but tonight’s decadron episode very likely made my “Top 5 All Time Most Irrationally Angry At My Kids”--list. We started our steroid pulse on Monday and I was prepared for the increased appetite and mood swings, neither of which have happened yet. What I was NOT prepared for was her completely balking at taking the damn meds! A wise parent once told me you cannot force a child to eat, sleep, or poop. Let me just add “take steroids” to that list.
It took Blaine and me (are you ready for this?) an HOUR and FORTY-FIVE MINUTES to get one stinking pill down her tonight. Her resistance has gotten worse each dose, but tonight’s was over the top. The first half hour was her pursing her lips, holding her hands over her mouth and shaking her head. She was so wound up, crying and fussing and fighting and thrashing, that when we finally got it down her, she threw it right back up. And the next time. AND THE NEXT. How do you explain to a 4-yr old that skipping a dose is NOT an option? We crushed the pill, we tried the pill whole, we used applesauce, yogurt, pudding and kool-aide. There was bribery, pleading, tears, whining, begging, threatening – all to no avail. Then Blaine tried logic and reasoning – who was he kidding? Finally we got her to swallow a pill and not vomit it back up. Thank goodness, since she was running out of clean pajamas!
So 11:30 pm saw me headed to the grocery store, naturally, in the rain. You have to understand how wound up I am at this point. Angry at Kendrie, angry at Blaine (don’t all Ugly-Parenting moments lead to Ugly-Marital moments as well?) angry at cancer in general. I get to Kroger, and every single buggy is outside, in the rain, soaking wet. I say to the lonely cashier, “don’t you have any dry carts?” and he replies, in a brilliant, thoughtful, the-customer-is-always-right sort of way, “No”. I completely lost it. Huffing and puffing and stomping about, making very loud comments like “isn’t THAT great customer service, that I have to go out in the rain to get my own damn cart!” and then I make a big show of bringing it inside and pushing it over to the restrooms, ripping half an entire roll of paper towels off the wall and drying off my cart, all the while making my displeasure known. Of course, a few minutes later I realize what an Asshole I’ve been and hide for a while in the produce section behind a display of oranges, hoping that particular cashier will be off-duty soon and someone else will check me out. But alas, I had to show my face again. So Midnight-Cashier-Man at the Kroger on Watson Blvd, if you are by some chance reading this, my most sincere Apology.
Ah, what a day I’ve had. But you know? I actually feel better getting it all off my chest .... so thanks!
Hope you all have a wonderful holiday weekend, and Happy Valentines Day! Love, Kristie
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KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: Well, it’s a tossup. Five hours in the van, plus I had two strange women coming at my legs with needles which wasn’t much fun, and two insane parents force-feeding me medication until I threw up all evening. Take your pick, they all pretty much sucked. (can I say sucked?)
BEST THING ABOUT HAVING CANCER TODAY: Not much.
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