In the spirit of one day at a time… today she feels well.
Today homework is already done.
Today her stress level is low.
Today she swims in the water like the fish she longs to be.
Today as I sit poolside with my computer, I can watch her laugh and smile with her teammates.
Today the less rigorous of the two practices, her CYO team comes first – but she is sure she can manage a double practice.
Of course about 7 days ago we raised the Celebrex back to its (in my opinion) too high dose.
No one can figure out why the drug works for her, but it does. And I am grateful, but scared all at the same time. The list of medicine grows. The knowledge of Cowden’s Syndrome remains spotty at best.
We know of the cancer risks, but the chronic pain, the low endurance, the vascular issues, the migraines….
One of our doctors theorizes that the Celebrex has kept her AVM in her knee from acting up. Given the potential side effects of Celebrex I think it’s the medical equivalent of robbing Peter to pay Paul.
Sometimes I feel like with all the doctors we see, there is still no one minding the store. We travel between specialists, between symptoms, between surgery and recovery.
The blood for the thyroid won’t be drawn for a month. She slept 14 hours Friday night and another 12 Saturday night. No major plans for us for a while.
The throat clearing never stopped with the thyroid removal, and I am flat our unsure who to even ask.
Sometimes I like to play mind games, and forget about Cowden’s all together. I daydream a bit…
And then I remind myself that every illness, every experience, every event that occurs in our lives helps to define us and make us who we are supposed to be. Like that ‘ever changing puzzle” my Dad used to tell me about.
And I think of my friends and family. They are contending with diagnoses new and old. None of them fun. I would never say to them that experience shapes who we are. That is a personal belief that the wrong person just might deck me for.
Especially on my heart is my internet friend from Australia. Never have I felt so helpless as her daughter endures multiple brain surgeries and I am 12 hours and several continents away.
Today. Today my girl feels good.
Today I will do as I have been taught and let tomorrow worry about itself.
Today we are BEATINGCOWDENS!