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.