321 Days to Go
Kendrie had her monthly clinic visit to receive the chemo drug vincristine in her port (the device in her chest) on Tuesday. This was an even-more-special day, as every third month, she also gets “sleepy medicine” in her port and they put another chemo drug, methotrexate, in her spine. Yippy-Skippy! (oh, sorry, that little “splat” you felt was the sarcasm dripping.)
Life is indeed different, now that we are only going to the clinic once a month. I’m sort of out of my clinic groove, if you know what I mean. Used to, as I drove the 225 miles round trip each week (sometimes twice a week,) I had meticulous planning and forethought …. the right bags packed with the right snacks, activities, meds, etc. The correct “extras” in the van …. stroller, pillow and blanket, port-a-potty (hey, those steroids at the beginning were vicious!) and enough antibacterial wipes to clean every restaurant booth from here to Atlanta. I had the exits up and down I-75 wired --- I knew which exits had the best restaurants and the cleanest gas-station bathrooms, not to mention the fast food places that sell pop in the Styrofoam cups like I prefer. And, I knew the exact areas where I did and did not get cell reception.
Tuesday, as I made the trip with Kendrie to the clinic, it occurred to me that while some things are the same, many things are different. I made sure to pack a snack bag since she wasn’t allowed to eat before the spinal tap and I knew she would be hungry afterwards ….. but it wasn’t until I was actually packing the bag I realized I no longer have a stockpile of her favorite snacks and drinks. I didn’t even mess with an activity bag, just threw a few books and her favorite stuffed animal in the car. I remembered that I needed to pack a blanket, so I could cover her up for the half hour she is required to lie flat after the spinal …. but couldn’t find the fleece blanket I used to take. Our online friend Lisa from San Diego was kind enough to make and send the kids “rag” blankets last month ---- thank goodness that was close at hand because that’s the one Kendrie insisted on taking. (Lisa, your thank you note is on its way --- the kids LOVE them!) I forgot the pillow entirely. The port-a-potty was thrown away a long time ago. Thank Goodness.
Perhaps the biggest change I noticed, however, was my own mind-set. Kendrie watches movies on the portable dvd player while we’re driving, so I’m left pretty much alone with my thoughts. Used to, I spent most of the two-hour drive preparing myself for the visit; thinking about what procedures she’d be having done and planning my list of questions for the nurses and doctor. On this Tuesday, instead, my mind was really wandering. Just to show you how harebrained this whole leukemia journey has made me, I thought I would share with you some of the conversations (plural!) I had with myself, at various times throughout the drive, and throughout the day:
Kristie: “So, how’s it going?”
Self: “Oh, fine, thanks for asking.”
Kidding. It was more of a meandering, aimless, one-sided conversation that went something like this:
“Wow, look at all the dead kudzu on the trees.” (If you don’t live in Georgia and are unfamiliar with this anomaly of nature, kudzu is a vine-like plant that grows up and over anything that moves at less than 5 mph and chokes the very life out of it. I’m pretty sure turtles and elderly people will both be endangered species here before too long.) “I don’t ever remember seeing kudzu dead like that on the side of the highway. Was it dead last winter when I would drive Kendrie to her chemo appointments? Holy cow, last winter? It’s amazing to me that we’ve been doing this for over a year. I’ll have to remember to check next year to see if the kudzu dies again. Wow, that’s even more amazing, that we’ll still be doing this a year from now. Well, no, technically we won’t. By next January, she should be done, woohoo! Yep, that’s good news. Shoot, there went the exit with the drive up ATM. Damn it. Gotta remember to pull over and put the numbing cream on Kendrie’s port and her spine before too long …. what was the exit with the Chick-Fil-A again??? That way we can grab some lunch since it’s almost 11:00 …. no, wait, she can’t have anything to eat until afterwards. Just who schedules a five-year old to be NPO for an afternoon spinal? Hey, look, there’s a shoe in the middle of the highway. Who *does* that, anyway? Why would anyone throw a shoe in the middle of the road? Are they just driving along and decide they don’t like these shoes anymore? And why is there always only ONE shoe in the road? Where’s the other shoe? Crap, there goes that other exit I wanted. Boy, I’m really talking to myself a lot today … is it considered talking to yourself if you’re doing it in your head? Isn’t that actually considered thinking? I’ve got to remember to bring that blanket into the clinic with me, and my camera, too, since Catie and Mary-Grace will be there. I wonder if we’ll be able to go to dinner with them today. If we can’t, maybe I can order pizza from the new Pizza Hut Delivery Location that just opened by our house. Sure wish they had opened that thing back in our Induction Days, when all Kendrie would eat were those breadsticks. Wow, remember how obsessed she was with those breadsticks? Speaking of eating, where is that exit with the Chick-Fil-A? Where the heck did I put the numbing cream?”
And so on and so on.
Then, I had another bizarre conversation with myself while Kendrie was getting her spinal. They had her curled over on her side, fixing to start, while one nurse held her down and the other nurse made sure the meds were ready. The nurse-practitioner, who is performing the procedure, sits behind Kendrie and I sit in front of her face, trying to be a soothing presence, while at the same time not block the big screen that is showing Scooby Doo 2 (total crap, by the way.) The child-life specialist comes in and introduces me to a child-life intern, asking my permission for them to stay and watch the procedure. So there is a pretty full room, and Kendrie has started crying like she usually does with the “sleepy medicine” (some kids report feeling sort of drunk or giggly when they get it …. If this is how Kendrie acts when she gets drunk, she will be ostracized from every sorority function, as she is a mess.) As a mom, of course, it breaks my heart to see her upset and to hear her asking me, in that pitiful, slurred voice, “Are they done yet?” when I know they haven’t even started. So, as is our usual routine, I started rubbing her forehead and singing “You are my sunshine, my only sunshine” to her, in a voice I hope is comforting and calm. Thank goodness Simon Cowell isn’t there, is all I can say about it. Maybe because this was her first spinal in three months and I had sort of “forgotten” about them, maybe it was remembering exactly what we were doing to her, and why, and the fear of a relapse diagnosis each time she gets a spinal …. I don’t know …. But all of a sudden I started crying. Then my conversation with myself went something like this:
“Oh, for God’s sake you loser, pull it together. You have to be stronger than this for Kendrie, it’s certainly not going to help her any to see you cry. Why are you crying anyway, you dork?? Things are fine, she is fine, things will BE fine. Besides, that intern is going to see you cry and think you are a bonehead. So? What do I care what some stupid college intern thinks of me, anyway? Does her kid have cancer?? How would she know? Now why are you calling the intern names? Is it HER fault you are a cry-baby loser??? For Pete’s sake, pull it together woman!!!”
You know, I go along fine for months at a time, then wonder if the staff at Scottish Rite is surreptitiously calling child-welfare on me. Or perhaps Bellvue.
Then, like that isn’t proof enough of what a weirdo I’ve become (my long-term friends will perhaps raise an eyebrow at the past tense of “become”) let me tell you about the third and final conversation I had with myself at dinner. Well, no, it wasn’t the final conversation of the day … I still had the ride home from Atlanta to get through, but it’s the final conversation I’m going to share with you!
We had really lucky timing on Tuesday and had clinic appointments on the same day as two of our friends. Catie and Mary-Grace and Kendrie were all finishing up about the same time, so we decided to go out to dinner together. I’ve said all along that one of the perks (if you can call it that!) of having a kid with cancer is meeting other families going through the same thing. It’s a bizarre little fraternity, but we’ve met some amazing people this way.
"Kendrie and Catie, photo taken 01-25-05"
So we went to a local restaurant, than sat around talking afterwards. Mary-Grace’s dad Todd won all three girls stuffed animals from “The Claw” which pretty much made him the hero of the hour (thanks, Todd!) and the three moms were visiting about some of the other mutual friends we have all made. Mary-Grace and Catie both have lots of scheduled inpatient chemo, and have met lots more families, and know many more patients personally, than we do. So as we were talking about how they knew this family, or how they knew that family, and how everyone was doing, the following words actually came out of my mouth: “In a weird way, you guys are lucky to be inpatient so much. We haven’t been inpatient since diagnosis and I haven’t met anyone.” A few seconds later, when my brain caught up to my mouth, I wondered ….. holy cow, did I really say that?????
So I spent the next few moments vacillating between the self-recrimination of “You Idiot! What a completely thoughtless …. Not to mention STUPID, thing to say!!!” and the other thought process going on inside: “How odd is it that I’m sitting here with these two moms that I had never met, or even heard of, six months ago, and under different circumstances would never meet. Between the three of us, our kids have almost three years of chemo under their belts, brain surgery, shunts, radiation, more surgery planned next month, scans, MRI’s, more oral meds than any of us can count, spinal taps, bone marrow aspirations, one extremely undignified rectal exam earlier in the day (I won’t mention names, but let’s just say that a certain 2-yr old handled it with much more poise than *I* would have!) and yet, I’m having a perfectly lovely and wonderful time!”
Like the chorus of this song says …..
“But we're never gonna survive, unless...
We get a little crazy
No we're never gonna survive, unless...
We are a little...”
The lyrics might be dark, but the chorus is right on!! :)
So, maybe I’m a little crazy. (Perhaps the word “maybe” is un-necessary!) But if talking to myself and having inane conversations in my head gets me through it, which in turn gets Kendrie through it, then so be it. I feel blessed to have such wonderful people to get a little crazy with. Jenny and D.D., (Todd, too!) thanks for a wonderful meal ---- we think the world of you!
Love, Kristie
####################################
KENDRIE’S PERSPECTIVE:
WORST PART OF HAVING CANCER TODAY: Well, it’s day 3 of Steroid Week, which loosely translates into “start crying the minute I wake up, until Mom gives up convincing me to go to school, so go back to bed, and then when I finally do get up, lay around on the sofa all day eating my weight in American cheese slices.” Hey, hang on …..
BEST PART OF HAVING CANCER TODAY: Same thing. Especially the part about the cheese.
KRISTIE'S PERSPECTIVE: But did she mention the 45-minute tantrum she threw yesterday because no one would play "Break the Ice" with her??????
No comments:
Post a Comment