"Little Known Side Effects from Chemotherapy"

1st week of IM #2


First of all, let me say Wow, and Thanks! To all of you who offered support and empathy and encouragement and kindness (and best of all, babysitting!) after my last journal entry. I should have my mini-nervous breakdowns in public more often, ha! Secondly, at the risk of sounding like an obnoxiously proud mom ….. how stinkin’ cute are my kids???? We took these pre-Easter photos tonight at a local park and I’m quite proud of their cute little faces, if I say so myself.

Kendrie’s appointment on Monday went well. She cried during the spinal tap, which is always upsetting, but the “sleepy” medicine has an amnesiac effect and she never remembers crying, which is good. I try hard to think of those procedures as a pro-active, assertive way to deliver a knock-out punch to leukemia, and remain positive about them …. But in the back of my mind is always the terror that later that afternoon we will get that awful phone call that “something showed up in the spinal fluid……………….” So I both anticipate and dread spinal-tap days.

But! No news is good news and Monday’s appointment marked the official beginning of Interim Maintenance #2. Same protocol as IM #1; it’s a 56-day cycle, with IV meds every ten days, escalating in strength, with another spinal tap thrown in half-way through for good measure. Then, the last two weeks off to give Kendrie’s bone marrow a rest, which is when we hope to go home to OKC for vacation if she’s feeling up to it and her counts are still good enough. (Let’s just say we learned our lesson at Christmas and are now firm proponents of purchasing flight insurance.) She’s already started with a few side effects; loss of appetite, and we’re giving Zofran (at the approximate cost of $8,219 per pill; thank heavens for Tri-care) for nausea and vomiting (but not quickly enough, the first day or two. Some lessons are learned the hard way.)

Speaking of lessons, I thought I would share with you a few of the less-commonly known side-effects and ramifications of chemotherapy and how it affects both the patient, and the people who surround her. These are all medically documented facts and I’ll be happy to submit my personal findings to the Surgeon General's office for inclusion in whatever important medical announcement they’ll be typing up next. I’m also pretty sure other cancer-parents will agree with me on most, if not all, and I hope they’ll feel free to add in other effects felt in their own families when they sign our guestbook.

#1. The parents of a child on chemotherapy get very, very stupid, as evidenced by the inane conversations they have with said-child on a daily basis. Case in point; conversation today:

Kendrie: “When will Dad be home? I want a new kite”
Kristie: “After work”
Kendrie: “When is that?”
Kristie: “This afternoon, same time as always, before dinner.”
Kendrie: “But after dinner will take too long”
Kristie: “I’m sorry, I can’t help how long it takes.”
Kendrie: “When will we pick the kids up?”
Kristie: “3:30 pm, same as always”
Kendrie: “But that will take too long!!!!”

This might not sound so bad until you realize we have the same conversation at least a dozen times a day. Kendrie is convinced I have no concept of time and am completely incapable of making things happen on a schedule that is convenient for her. Everything, and I mean EVERYTHING, “takes too long”.

#2. Unlike parents, who get stupid, children on chemotherapy attain near-brilliant, unshakable, dog-with-a-bone-type qualities regarding certain issues. Case in point, conversation today:

Kendrie: “Can McKenzie come over to play?”
Kristie: “I’m sorry honey, McKenzie moved to Texas for her Daddy’s new Air Force job”
Kendrie: “But I miss her! She’s my best friend!” (bear in mind McKenzie is a casual friend whom Kendrie hasn’t seen, played with, inquired about, or asked for in any shape or manner in at least a month.)
Kristie: “Well, we’ll have to make some new friends”
Kendrie: “But McKenzie is my best friend and I only want her!!!” and then proceeds to cry for half an hour, recounting every fun second she has ever spent in McKenzie’s company. She’s like “Rainman”, for pete’s sake, and can’t let it go.

#3. Promises mean absolutely nothing. Case in point, conversation today:

Kristie: “So you SWEAR, if I get dressed, drive to the bank to get cash, drive you to Stevie B’s (local pizza parlor) and buy you pizza, you will eat it? You PROMISE??”
Kendrie: “Yes, mom, I promise! I really, really, really, really want pizza for lunch; PROMISE!!”

Then she proceeds to eat one single solitary bite of the pizza … which, by the way, is the only single solitary bite of anything she has eaten for three days, if you don’t count the four bites of applesauce that we’ve mixed her Zofran in.

#4. There are actually MORE than seven layers of skin, as evidenced by the rough, tough, completely un-feminine patches of raw flesh around my knuckles caused by swimming in Purell for the past six months. I’m down at least nine or ten layers so far with no end in sight.

#5. The FDA is currently involved in secret meetings to announce the new, official food group for kids on chemo: “NOTHING” As in, “Kendrie, what are you hungry for?” NOTHING. “Kendrie, what would you like to eat?” NOTHING. “Kendrie, what are you going to waste away to if you don’t start eating?????” The only other food group being considered is the "Pokemon Blue Slurpee from Target" group, which we now value as our friend because at least it’s got sugar and calories in it, right?

#6. Children on chemotherapy become quite attached to their barf buckets and will sometimes insist on carrying them around town. Just because you see a child in the dentist’s office with a plastic bowl sitting beside them, do not immediately assume the parent is irresponsible and possibly infecting *your* child with a contagious stomach flu. Consider that your runny-nosed little hooligan might actually pose a much greater threat to barf-kid over here.

#7. The parents of kids on chemotherapy develop x-ray vision which allows them to see germ potential at a thousand yards. If you see a parent wiping down a restaurant booth or a shopping cart with antibacterial wipes, don’t think we’re crazy. Well, on second thought, maybe we are. But short of inventing a plastic bubble suit, it’s the best we can do for our kids.

#8. And lastly, because this one seems to affect me personally the most; The parents of children on chemotherapy, after spending months and months at home alone with these children, sometimes lose their adult social skills and become quite inept at grown-up conversation and humor. Case in point, conversation #1 today:

Dental hygienest: “Well, your teeth are looking very nice”
Kristie: “Thanks, I guess I’m one step closer to that career as a supermodel.”

(OK, for those of you who don’t know me personally, I am closer to 40 than I am 30, and I’m closer to 200 pounds than I am 100 …. So I thought that comment was quite funny. The look of confusion told me that the dental hygienest didn’t quite get the joke.)

Conversation #2 today:

Kristie, to Kendrie, walking up to our van in the parking lot, “Holy crap, look at this terrible parking job I did … I don’t remember doing such an awful job! Good gracious, it's so crooked!!”
Person behind Kristie, “That’s MY van”

So I guess rather than sign up for that computer class to figure out how to make this Caringbridge page actually look the way I want it to look, I’ll be spending my tuition money at the Emily Post School for Cancer Parents. Or maybe I could just buy duct tape for my mouth, I imagine that’s cheaper.

Wish us luck this weekend in DC for the Easter Egg Hunt. The forecast is calling for rain and the event will not be rescheduled if that happens. I know we’ll still have a great time visiting old friends, meeting new friends and seeing other sites, but my kids are very excited at the possibility of seeing the current resident of the White House, "George Washington". I have a funny feeling they have just as good a shot of seeing George Washington as they do George Bush, but I don’t want to burst their bubble. At least they're learning *something* about American History!

Happy Easter to all of you, also!

Love, Kristie
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KENDRIE'S PERSPECTIVE:

WORST PART OF HAVING CANCER TODAY: To be honest, my stomach is feeling a little freaky lately.

BEST PART OF HAVING CANCER TODAY: When else is my mom going to let me have just a blue slurpee for lunch???