Have you heard of tyrosine kinase inhibitors (TKIs)? Neither had I until I was diagnosed with leukemia. The discovery of these drugs revolutionized the treatment of CML. Without my TKI, I would likely have needed a ghost writer by now, if you catch my drift.
But I ain’t gonna need a ghost writer for some time yet, according to Dr. Blood. For that news alone, my beloved caregiver deserved the delicious piña colada muffins I brought her yesterday, my thank you for keeping me alive for yet another year. (These muffins were much better than last cancerversary’s raspberry scones, I must say. I think it was the toasted coconut.)
Every three months, Dr. Blood checks the number of cancer cells roaming around my blood. Those nasty cells have been few and far between for a long time now. Upon reviewing my most recent magnificent results, Dr. Blood decided to lower my TKI dose. Since TKIs depress the production of all blood cells, not just the bad ones, Dr. Blood is hoping that a lower dose may allow my body to produce more healthy cells. To use a recent example, I’d lower my risk of complications after a fall if I had more platelets to help me heal.
Yes, I still have CML, but my miracle drug is effectively keeping the illness at bay. If I stop taking my TKI, those ugly cells will become fruitful and multiply again. Because it would be unethical to remove patients from a drug that is helping them, researchers have only studied patients who have stopped taking their TKIs against medical advice. I am not and will never be one of those patients. If Dr. Blood tells me that one pill a day will keep me alive and well, who am I to argue?
You might wonder if I am in remission or if I could go into remission. Dr. Blood has never used the R word with me. Some leukemias can go into remission but not mine, as far as I know. The doctor once told me my cancer-cell counts are so low, it’s as if I’m in remission. (Keep in mind my understanding of remission may be completely inaccurate since I’m a lowly layperson who does not seek out medical information on the internet. Furthermore, my disability pension does not afford me a medical consultant.)
But I have a remarkable ability to manage my anxiety in any situation using my skewed reasoning. I tell myself that were I in remission, I’d spend my time worrying that my leukemia would return. Instead, I can rest easy knowing I’ll always have CML, so long as the CML is well controlled. The grass has to be greener on my side because I’d most certainly maim myself were I to try to climb over your fence.
So for now I’ll continue to amble along, hopefully upright, knowing that at least one part of my medically complex body is responding well to intervention. Now, if I could only get the other medical challenges–the feisty polycythemia, the rebellious liver–in line, I’d be laughing. If I didn’t laugh, I’d cry, which is a-okay too. Remember Inside Out?