Radiation tricks and Halloween treats

I try not to dwell on my pain, but since July it’s been such a HUGE part of my life that it seems impossible to see past it.  The pain comes because the cancer cells are building up in my bones to such an extent that they are bulking up the bone a little bit, actually making the bone larger.  This is a problem only because the membrane on the outer surface of the bone, the periosteum, is full of nerves and doesn’t particularly like to be pushed on.  It reacts, sending nerve signals like crazy, and the patient feels terrible bone pain.  This bone pain may be steady or it may increase over several days as the bone cancer cells increase.  Pallative radiation therapy is one way to reduce the pain in a particular spot to increase quality of life for cancer patients.  This Fall, I was in so much pain in my lower back that it became impossible for me to sit up for more than 15 minutes at a time.  By irradiating a spot just below the base of my spine 5 minutes a day for 15 days, this treatment killed the cancer cells in that section of bone, reducing its bulk mass.  As the periosteum was no longer pushed, it stopped sending pain signals to the brain.  I now feel no pain there and I am able to sit up again.  Hooray!

Meanwhile, however, the cancer cells infesting my other bones have grown unchecked by radiation or chemotherapy, and now they’re more of a problem. After 4.5 weeks without treatment, the pain in my ribs, hips, neck, and spine has rapidly increased, making even the simplest of daily activities, like doing laundry or going outside for a walk, impossible.  My pallative care doctor has been helping me try to keep up with the pain, but rare has been the moment that we’ve gotten it just right.  The pain just grows, and I get grumpier and grumpier as the days go by without lasting relief.  I’ve just gotten permission to take more of the opiates.  I hope this time it works.

While I have been in terrible pain for the last few days, there have been good times intertwined and moments worth keeping.   Last weekend, my husband came home from his business trips, my parents left, and we were alone, the four of us, for some much needed family time.  Daddy caught up on chores, the kids played upstairs and downstairs, and Mama sat in the recliner downstairs and worked on Halloween costumes.  Widget was a tornado this year, his choice, and we had spent several days the last week planning out the costume, drawing design ideas and x-ing them out as we thought of better ones.  A design failure was discovered at the last minute, and we laughed together as we fixed it, pasting scraps of ribbon on the back to reinforce the sewed-on strings that held dozens of minature goats and chickens, pots and pans, farmers and pieces of tree scattered about.  When he puts it on and turns rapidly in circles, the pieces whirl out from his shirt and it does give the impression of a hurricane!  A hurricane, Widget reminds us, not a tornado.  This is important, because he learned from his friend S that there was once a Hurricane Widget (well, his real name here) and he is pleased to share his name with a hurricane.  He was even more pleased to show up to school, costume stashed in his backpack, a big kid ready to surprise his friends.

Little Bear revealed this weekend that his costume is to be not just a dog, but Super Dog, a sidekick to his friend D’s superhero costume.  Unfazed (I had 48 hours!), I whipped him up a cape out of an old fleece blanket and a big red button, and he was adorable in last year’s costume and this year’s cape (Let’s call that going green).  Little Bear had a wonderful time, even though he had stripped off both layers in the warm classroom by the time I arrived to help with the party, and when I said he could leave his shirt off underneath he thought that was hi-larious.  “Dylan!” he cried, “I am naked under these clothes!”  He sparkled in his parade, a proud Super Dog amidst a tiger, a dog, and a dozen superheros in this, the youngest class.

We trick-or-treated that night, after a quick afternoon playdate making old-fashioned popcorn balls (did you ever get those in your Halloween bag? We always did, thanks to the same neighbor up the street.), and while I thought I was going to drop, I just stood at the sidewalk and smiled and smiled as the children ran with different packs of children throughout the neighborhood, all lit up for the holiday.  We saw @urbanmama on our travels, a special treat since neither of us were close to home.   (Then, lots and lots of rest.)

Today we are back in school, and my meds are working better.  Widget made me a sign this weekend, at the worst of the worst, when I lay discouraged in bed, and I keep it close to me now, the first-grade scrawl urging “Feel Better, Mommy!” cheering me as I push on to normalcy.  To the new normal.  To pushing myself to work when I can, but rest when I can’t, and to know always that it is enough.  Today I pray for a lasting solution with the meds while we wait for the time when I can begin chemotherapy again (end of next week), the chemotherapy that will hopefully kill more cancer cells in my bones and help me reclaim this part of my life.

30 Responses to Radiation tricks and Halloween treats

  1. “I’m naked under these clothes!” – love it! And I bet Hurricane Widget was a greaat hit.
    I think of you every day, and I so hope the pain control measures catch up with the pain for you. You are beautiful and grace-full and amazing. Lots of love to you & yours.

  2. loran says:

    Thanks so much for sharing your journey Susan. I am so glad that you got to be a part of so much fun, joy, sewing, partying and Halloween merriment! xo

  3. nancyspoint says:

    This post astounds me because I am in awe of how you face your pain. I don’t blame you one bit for feeling a bit grumpy from time to time. I am also in awe of anyone who makes Halloween costumes!

    I am so glad your meds are working better and I hope that continues to be the case. I hope you can indeed begin chemo again soon to kill more cancer cells.

    Your advice to yourself is profound – “pushing myself to work when I can, but rest when I can’t, and to know always that it is enough.”
    Somehow that advice is perfect for all of us. Thank you for sharing your wisdom. My best to you. I’m thinking of you.

  4. magpie says:

    Ooh, popcorn balls. I remember those.

    Thinking of you with lots of love.

  5. Susan, I am so glad you’re telling it like it is, and that the sweetness is oh so sweet. I wish I could have seen that hurricane in action! You pain a delicious picture.

    Sending love and prayers, always.

  6. I love the costumes. You are so clever.

    After a few days of busy-ness, we also often need family time. In fact, I often leave my pajamas on all day to remind me to stay in the house.

  7. Skye says:

    Thanks for your honesty on the journey. I am grateful that the radiation helped your back & am sending well wishes that the next good answer is found to have more good days.
    Sweet abundance of life & love to you!!

  8. *m* says:

    The costumes sound amazing!

    And while I am glad the radiation helped, I am disheartened to hear that you are still having so much pain. I hope the meds are more effective over the next few days as you get ready for the next plan of attack.

    As always, thank you for teaching us as you share. Hugs to you and your guys.

  9. Bon says:

    hoping for a plan that will minimize pain all over, Susan, without minimizing the time & joy you take with your small Hurricane and his brother.

    nicely done on the costumes.

    • Thanks, bon. It was always my dream to be “that mom” and to help my children move their ideas to completion. I love that they’re old enough to have big ideas *and* sit down at the table with me to figure out how to make them real!

  10. hurricane Widget is probably my all time favorite costume!
    And you my friend— so much more than enough. so very much more!

  11. Susan says:

    So happy that the radiation worked!! One victory will lead to another. I can feel your boys Halloween excitement though the computer.🙂

  12. JoyinChaos says:

    Making fabulous Halloween costumes in the middle of it all. Parties and trick-or-treating and the works. They need to make a superhero costume with your logo on it.

    • One of the first cancer gifts I ever got was a cape for myself – white lined with pink ribbon, handmade for WhyMommy. This was back in the day that my blog was anonymous and we were all shaking a bit from the transition. I wore that cape around the house to the delight of my toddlers; we all laughed and laughed.

  13. I am so sad that you have to go through this. I feel guilty that I am living my life (as an old lady) without pain, while you, with two little kids, have to suffer.
    God bless you and your family.

  14. Claire says:

    those are amazing halloween costumes!

    side question: i am not a dr by any means but is a stem cell transplant an option at all? I hope you don’t think i am being intrusive with my question if so no worries!

    also, you are amazing!

  15. AnneMarie says:

    Susan,

    Thanks for popping over to wish my mom & I good thoughts…..Not much has changed at all, at least not when I compare my tx to hers.

    I hope they manage to get your pain under control and that the next round of tx does a number on the bone mets.

    I’m glad you enjoyed Halloween. I love the costumes (I wasn’t ever “that” mom….) and the creativity…..

    I hate that you are going through all of this…. keeping my promise to open my mouth and keep the conversation going……

    xoxo
    AnneMarie

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  17. Catherine H Myers says:

    So good to hear about your wonderful Halloween with your boys. I may have to borrow that tornado/hurricane idea some day… it’s so cool.

    I’m so sorry you are experiencing so much pain. I hope the docs keep trying one thing after another until your have relief from all of the pain.

    • Help yourself! I’m sure we’re not the first to dress up that way – I just thought it was awesome that my kid thought of it. He was so happy to be just what he had imagined.

  18. stardustdawn says:

    Pain is so draining. I’m amazed at all you are doing as you try to push past it. I wish I could take it away for you.

  19. Amanda says:

    Clutch those notes and kiss those sweet heads. And rest. xo

  20. Your blog is so much one of laughing and crying, portraying the extremes of life. The Halloween costumes are so creative, funny, scientific and magical at once. The description of the cancer growing inside of your bones is not one I have ever heard, read about or imagined. You are so brave just to put it all down in writing and to explain it scientifically, why the bones hurt, and yet also be able to convey the emotion of it as well. You are a genius of life.

  21. Aunt Pat says:

    I bet the boys looked adorable !
    Wishing you a better tomorrow. Sending you hugs and a lot of love.

    Take Care

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