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Straw vs Camel’s back

I am just having a bit of a day and therefore this post is really going to vent….it’s going to blow steam like a tea kettle!

Peyton had her spinal tap with chemo this morning and we bopped in fairly happily. For whatever reason she was actually happier to be going in for a “back pokey” than to be going to school, so I guess that says something about that. I know she likes school, I know she has a great time, but she was totally thrilled to be getting a needle in her spine s she could skip class! Something wrong there.

In preparation for the LP, I spent a full night tossing and turning, completely unable to sleep and having some wicked bad dreams when I finally did. I guess in the recent barrage of bad news that we’ve been under and the seemingly constant stress of fear and anxiety, my mind went to work last night with all the “what if’s”. I woke up with nothing but the idea of Peyton’s counts coming back showing relapse, her spinal fluid coming back suspect, just any number of things that could have gone wrong today.

Instead, her counts came back fine, in the same stable range they’ve remained for the past months. Not a drop or a dip to be noticed. Besides achy legs to peck away at my peace of mind, which is probably from her more active lifestyle of being a preschooler now and much more on the move, there is really nothing that should leave me to think anything about Peyton is at risk. It’s just out and out fear that I can’t do anything about. I pray, I give it up to God the best I can, but that doesn’t make it entirely go away.

She was pretty decent all things considered, but we got to the clinic at 8:45 and we weren’t able to start her procedure until almost 11:00 which meant we weren’t able to give her anything to eat or drink until after 11:15. She was NOT a happy camper about that. Her magic cream, which normally works like a charm, did not so much do it’s charm-working magic today. She loved the drugs that she happily and repeatedly announced made her “feel funny”, but when the needle started to go in she went into Tazmanian Devil mode and all arms and legs shot out. They have to remains still and curled in a ball to keep the spine in the proper position to give access to the spinal fluids so this reaction wasn’t a good one. She also started crying and screaming and although it was over quickly and the nurse/doc team did the best they could, this time she really felt everything and I hate that.

I had a long talk with Kyleen, our child life specialist about dealing with all the emotional upheaval with the kids. Answering all the questions the kid have about death, why, how do we know it won’t be Peyton, how do we talk to them when one of the kids take a turn for the worse and we have to prepare them for the loss of another friend? Is there a better way to help them accept this reality? How can I help them cope when I’m so obviously having a hard time coping myself?

Yesterday a group of psychologists came in and talked to the moms at Little Tales and it was one of those things that you didn’t realize how much you needed it until after it was over and I thought “WOW, maybe I do need a therapist!” Although, I don’t know that they did so much as just getting the ball bouncing between the moms and getting us talking to each other that helped. Maybe that was their gift to us, letting us help each other. Because a lot of what the other moms said hit me and resonated with me, and I GOT it and understood it so clearly.

So, I guess in the rambling from subject to subject today, I had a talk with the doctor today about some of my fears. I asked her about Minimal Residual Disease, which is a testing for a deeper sample of cells to count at a larger scope whether there is still Leukemia present. She explained some of that to me, but I think she looked at me waiting for me to ask the question and I couldn’t do it. I did ask if Peyton had been tested for MRD, which not all kids are, and she has been. But I couldn’t bring myself to ask if she still had residual disease. I don’t know if I want to know. She didn’t offer up the answer and I didn’t ask. I totally chickened out.

I told her about my anxiety and my fear that with Peyton’s higher risk that she’s the next to relapse and the doctor didn’t try to pooh pooh my fears away as unnecessary. I just poured it out there about the relapses, the second relapses, the relapses after bone marrow transplant, the relapses during treatment, the illnesses after treatment was all over, just the constant uncertainty of it all. She didn’t make me feel stupid for worrying, but she just acknowledged that it was normal and it was part of the process and with Peyton’s end of treatment coming up it was likely to get worse before getting better. Which I don’t know if that’s a good thing or not, but I know that it’s true.

I finally got myself pulled back together, I actually felt better after having let it all out and gotten it out of my system. I guess it’s cheaper to tell the oncologist who is already getting paid that finding a therapist. Peyton was recovering well from her LP with a bag of Doritos and a drink and we were both looking forward to some lunch, as I do not eat or drink anything any time she has to fast for procedures…it just seems cruel.

We get out of the clinic. We get about 2 miles down the road and the truck goes down for the count. Red blinking lights! Gauges waving madly! It was like pinball without all the fun music and balls! I pulled into a gas station and just put my head on the steering wheel for a minute, trying not to think about the HUGE repair bill we’d just paid out to keep this gas-guzzling monstrosity on the road. And now something is wrong. And not wrong like I-can-make-it-home-and-deal-with-it-after-i-feed-the-starved-beast. More like hmmm-wonder-what-kind-of-nourishing-goodness-can-be-found-at-this-Chevron-while-waiting-on-a-tow-truck??

So, picture it! I have my neighbor…my WONDERFUL neighbor Greg come up to get us at the gas station…I have AAA send out a tow truck….I have my freshly LP’d and chemo’d daughter munching on Cheetos with milk because everything else in the store not vacuum sealed gave me the wilies…and I am about to lose my mind.

Because Greg comes all the way up to get us and he has to stay there and miss his own doctor’s appointment AND because we have to wait on the tow truck anyway because they won’t tow it unless I’m there. We wait, Peyton is ready to gnaw the leather off the steering wheel. The tow truck finally arrives and the guy has decided he’s taking my vehicle to some auto shop in north Tampa! No no no, I live in Brandon, you’re taking it to Brandon. He looks at me as if I’m speaking Latin. BRANDON! You will drive that big black truck to BRANDON. I go to give him directions to the shop, he tells me, “I don’t need the address, I’ll just follow you.” Ok, whatever! We wait, while he gets the whole hookup thing done. Most exciting part of the past hour.

Now get this! We get to Brandon, we get to the body shop. Our AAA plan says that we’re covered for 10 miles of towing and then it’s 4$ a mile. The trip was 10.5 miles. He charges me 4$ !!!! Yes he does! He does the whole “we round up to a whole mile”, I wanted to say “well, I round down, #$#hole.” I wanted to give him 2.00$ for the ½ mile I owed him because I could have had him stop at the 10 mile marker and pushed the truck the last half mile! I probably could have driven it the last ½ mile because it had had time to cool down! Greg’s fantastic idea was to have had the tow driver stop at 9 miles and then call AAA again and send out another driver so we’re good for another 10 miles, right??

Four dollars nearly drove me over the edge. I was all outrage and injustice, I’m talking like superhero proportions! I was prepared to tie a huge T to my shirt and become Tow-Girl who fights for the rights of stranded travelers everywhere.

Then it occurred to me if I got into a screaming fit with this guy over 4$ and did something stupid like really take out all my frustrations and irritations on a guy who’s just doing his job…or stupid like rip off his arms and beat him to death with his own hands….there’s a sheriff in the car with my kid in it and he’ll probably have to testify AGAINST me and that would suck.

Right now Nathaniel and Rachael have just walked in the door from school thanks to a friend dropping them off. Another friend is picking up some Red Lobster for us….the only thing Peyton wanted to eat post-treatment and she hasn’t had anything to eat all day because she’s been soundly asleep since the car started moving at 2…and I want something in her day to be GOOD. I’m going to go let the kids dribble their good moods all over me and hopefully rub their happy on me.


5 Comments on “Straw vs Camel’s back”

  1. #1 shelley philibin
    on Mar 18th, 2008 at 5:49 pm

    I'm Katie Saylor's aunt and I just have to tell you that you are a terrific story teller! Fact truly is stranger than fiction and far more funny 🙂 It seems that writing is very therapeutic for you and for me when I read it. Tracey told me about Peytons website and I've been reading it faithfully. I've shed many tears through many smiles. When Peyton is healthy again, you should write a book. It would be a best seller in no time. Peyton is in my prayers with Katie and all the kids fighting so bravely everyday. I guess, my next prayer will have to include all the mom's too you are truly amazing!!!!


  2. #2 Dawn.
    on Mar 18th, 2008 at 6:47 pm

    WOW – Where do you start with a day like that? Kick it into touch, it's OVER!! I hope, I really hope, the kids came home in a happy mood and managed to rub some of it off on you.

    OK, Peytons count are fine. She's doing just great. I'm going to be asking God to make sure her Mummy continues to do just great as well. You're doing a phenomenal job with everything you've got on your plate. I'm also going to be asking that the bill for fixing the truck isn't as much as you fear it may be! If my car had died on me in those circumstances I'd have been spitting bullets as well.

    I really hope you get a better nights sleep tonight. I reckon you got used to having Pete back in bed with you and suddenly you had too much room to toss and turn in! On the other hand, maybe Peyton had crept back in there! Anyway, there's another thing to add to the list. To ask that you get some peace of mind and have those real fears eased a bit. Isn't it great to just be able to ask. Can you imagine having to go through this whole cancer thing without knowing that God is there to help you.

    Anyway, enough. I'm going to bed. It's nearly midnight over here.
    Wishing you a better day tomorrow – it's got to be an improvement!!
    Take care,

  3. #3 Alayna
    on Mar 18th, 2008 at 9:45 pm

    Bless your heart! I hurt for you, because I know those sleepless nights before a test and the fear that constantly gnaws at you makes everything turn into epic proportions. Add that to the fact that you're single-parenting it right now and you deserved to get to rip SOMEBODY'S arms off! Really! I'm praying for you – so glad to hear that Peyton's counts were totally normal, and I'm praying that's all they ever will be!

  4. #4 Marie
    on Mar 19th, 2008 at 4:27 am

    Even on a bad day you still find your humor. That's the only way through it sometimes!!

    Why is Peyton at more risk of relapse? Does she have MLL gene translocation or was her leukemia just very advanced when you found it? In any case, it's a good sign that she hasn't relapsed yet and is near the end of treatment so things are looking good!

    Bad karma to a jerk who would charge a stranded woman with a kid for half a mile. @$$hole indeed!!

  5. #5 Stephanie
    on Mar 19th, 2008 at 10:16 am

    Everyone sing-a-long with me …

    "Have you ever had a ride in Nissa's ratty old car?
    Have you ever stopped to think who's the slave and who's the master?
    Have you ever had trouble with your automobile?
    Have you ever had to push push push push?
    Cartrouble oh yeah"