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What do you do when you don’t know what you want to do?

I am still in my school-schedule of setting appointments for Peyton’s clinic visits.  So, at 7 AM this morning, when the alarm went off and I knew there were lovely late afternoon appointments we could have taken, I was one step away from ripping off my own foot and beating myself senseless with it.  There is NO reason not to make my appointments for 10 AM, allowing us all to awaken to our normal gentle sounds of the TV being turned on and the Wii warming up.

However, we made it to clinic on time and besides being ridiculously tired, all went well.  We had a freaky moment in meeting Dr. Kerr, strange only because our oncology group already includes a Dr. Kerr…. so we now have two Dr. Kerr’s, who have husbands who share the same first name, they drive the same vehicle, they work in the same medical specialty and now work in the same office.  Spooky, huh?  It confused the heck out of Peyton who kept whispering to me, “THAT is not Dr. Kerr.”  But Dr. K2 was exceptionally nice, Peyton loved her on sight and that made the new doctor an easier transition.

Peyton dressed down in a big way today and Dr. K2 made a comment about how cutely she was dressed….to which the nurses and I had a good laugh.  The day will come soon enough when she walks in with her full princess gear, tiara and rhinestones glaring and then Dr K2 can experience the full fashionista Peyton is.

Peyton’s counts were perfectly in range.

Her ANC = 1400
RBC = 12
Platelets = 210K

Peyton has a nice hack-y cough that had us fleeing Alabama a full day early.  Saturday night she complained that her throat hurt, Sunday morning she woke with a full blown cough and we packed up and left before she could get a fever that would leave us trapped for a 72 hour (minimum) stay at CHOA (Children’s Hospital of Atlanta).  The cough has remained, leaving us unable to go enjoy Little Tales on Tuesday morning, but with no fever, no red throat, no red hears, no funky post nasal drip, she was diagnosed with a summer cold.  Isn’t it great that we have an ONCOLOGIST to tell us she has a summer cold?

She got her Vincristine chemo via port and starts her monthly round of steroids.  All her at-home daily/weekly chemo med doses remain the same as her counts were perfectly where they are supposed to be.

This means she has 3 more of these visits in her protocol.  3!!  After what feels like a million trips to the hospital and the clinic, the “end” is in sight.  A friend asked if we are going to have an end-of-chemo party for Peyton in October.  Yeah…I don’t know.

Part one of me wants to have a rockin’ blow out fest for her.  We have the perfect reason to PARTY, two and a half years of chemo and radiation and it is the end of treatment.  Why would we even hesitate to throw down Animal House style?

Because Part two of me is scared. “End of treatment” doesn’t have any guarantee of “end of cancer”.  If anything, it’s an anxiety booster for me.  When we started this journey I was all “get to the end, get to the end, get to the end!” and now that we can see the finish line, I have a healthy dose of “Am I ready for this to end?”

I don’t know if there is a good way to explain this.  As long as we’re putting the toxic poisonous chemo into her system, it’s at least doing something to battle the return of the cancer.  If we stop that, there’s nothing to keep it from coming back.  Do you get how my fragile brain might start equating the toxic poisonous chemo as, if not a good thing, at least a thing with a very valuable purpose?

My friend Annike has this fantastic analogy she uses.  You’re walking a vicious, angry dog at your side with a desperately tight grip on it’s leash….a leash that keeps the dog where it’s supposed to be, it keeps the dog under some control.  Then one day you’re supposed to take the dog off the leash and hope it stays at your side, under control, but you have NO WAY of knowing what it’s going to do.

In the wake of so many of our friends relapsing post treatment, literally days after stopping the drugs, the reality is that I know it’s a possibility that end of treatment could mean nothing.  I don’t mean to seem pessimistic or Chicken Little about it all, and I do know that many children do make it successfully through treatment and into long wonderful cancer-free lives.  I praise God for remission, for the knowledge that the cancer is out of her body, but that doesn’t stop me from staying awake at night, almost listening for its return.  I trust God that no matter what happens we are fully in his purpose for our lives, but that doesn’t stop me from praying that we be graced with an end to this.

Peter and I would talk about relapse when we were deciding on him taking a job that meant a move away from our support system and hospital.  But we talked about it in a vague, unspecific way…a very non-possible possibility.  It has happened in such a wave lately, so many little friends relapsing that there’s a dread that what was once possibility could be probability.

Do I feel like celebrating when there is a feeling of “how do you celebrate what feels like opening the door wide open and inviting cancer back in our home?”  Oh, I also know that I want to celebrate her strength and endurance, her amazing spirit and joy, making it through what we’ve been through.  Letting everyone know how thankful we are for the support and friendship and unending encouragement through the past two years.

I don’t want to give her this great big “YOU’RE DONE!” and then have to turn around and say, “oh, I was wrong about that.”  Quandary.  One emotional baby step at a time on this one.

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9 Comments on “What do you do when you don’t know what you want to do?”

  1. #1 Holly
    on Jul 9th, 2008 at 3:24 pm

    Gosh, I don’t know what to say about whether to party, but it sounds as if *some* kind of celebration would be in order. 🙂

    I hate getting up early but I usually opt for an early appointment because it seems you end up waiting less in the waiting room.

    Hollys last blog post..Lake Surprise

  2. #2 My Cancer Treatments » Blog Archive » What do you do when you don’t know what you want to do?
    on Jul 9th, 2008 at 3:32 pm

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  3. #3 Peter Mayhew
    on Jul 9th, 2008 at 6:10 pm

    I say we go to Chili’s and have the molten chocolate lava cake.

    Then again, that’s my suggestion for everything these days.

  4. #4 Queen of the Mayhem
    on Jul 9th, 2008 at 7:01 pm

    There is little a molten lava cake can’t fix!

    I can imagine your concern….I would probably feel the same way.

    You might want to see what Peyton wants to do….let her thoughts be your guide.

    Oh…and you do have a little longer to make a decision!

    Here’s to continued good news!

    Queen of the Mayhems last blog post..When Pride Isn’t (Necessarily) Followed by Joy

  5. #5 GoteeMan
    on Jul 9th, 2008 at 11:20 pm

    Praying that your news continues to be positive and that Peyton will be fully healed and well…

    I somewhat understand your concerns and fears, perhaps from a little different perspective… I am a fulltime parent of two boys, fulltime caretaker of my wife, who is fully disabled by a neuro-motor disease, and a fulltime employee of a technology company, where I am a project manager – all from home…

    Blessings, love and light – from my family to yours…

    GoteeMans last blog post..It ain’t what you don’t know….

  6. #6 always home and uncool
    on Jul 10th, 2008 at 7:28 am

    She’s made the biggest step on the journey yet. Congrats!

    To celebrate, I have given you a blogging award. Come by, pick it up and take a bow:


    always home and uncools last blog post..It Was a Dark and Stormy Night

  7. #7 julie potts
    on Jul 10th, 2008 at 8:41 am

    I get where you’re coming from with the party. If not naming it “end of chemo” you could just have a celebration of life party. Celebrate the big milestones Peyton has hurdled over these past two years. Celebrate her courage and strength, like you said. And celebrate the future – you are all entering a new stage in your lives. All of you. Treatment schedules have consumed you for so long now. Celebrate the freedom you will now have as a family – your time to not be dictated so much by yucky hospital stuff.
    I admire you for your faith. I understand you’re scared the cancer will come back, and its seems Satan has a way of putting “proof” right in front of us to confirm our fears. Look to God, ask Him to show you signs of hope. And clothe yourself in God’s word, put on that armor of faith, and resolve to bring every thought captive to Christ.
    Peace and Blessings to You!

    julie pottss last blog post..weekend plans

  8. #8 Amy Nasworthy
    on Jul 10th, 2008 at 9:12 am

    I think I agree with Peter!! They have a great hot fudge brownie thing at Bennigans too!!
    Maybe that’s not a great idea for me because my Wii Fit tells me that I’m obese!!
    love you guys!!

    Amy Nasworthys last blog post..Pics #2 & grandma update

  9. #9 Annike
    on Jul 11th, 2008 at 1:19 am

    ditto…all the way…especailly since you mentioned my little analogy!

    love you!