What you really want to know, and are too polite to ask, is how sick am I and what’s ahead? Yesterday I got some answers and am happy to share them with you.
I’ve been on Gleevec for one month, and yesterday’s test results show that it’s WORKING. It wasn’t a given that it would, so this is a real relief. Whew!
I’m still very sick, and the Gleevec is working on my bone marrow to kill the cancer cells. Our goal is to get rid of every one of those demons and replace all the bad cells with good ones. The doctors say the situation is “being managed” and all signs show we’re going to get the cancer cells to zero and then work on keeping them there. At that point, I will be in remission.
Remission is the state of absence of disease activity in patients with known chronic illness that cannot be cured. It is commonly used to refer to absence of active cancer when this disease is expected to manifest again in the future.
Will I be cured? – NO. Leukemia comes in two forms, acute and chronic. I will be in a chronic phase and my body will accllimate to the Gleevec and will need continual monitoring. At some point I will have to “dose up” on Gleevec and adjust to the higher dosage. I’m at risk for changing to an acute stage of the illness if the drug therapy doesn’t work or if I stop taking the drug. Yes, going to an acute stage could kill me.
I mentioned before they don’t know what causes this. Well, they also don’t know why it sometimes goes from a chronic state to an acute state, so that’s another reason why it has to be constantly monitored and I’m in for a lifetime of blood tests.
Yes, this is a life-changing situation. I have worked since I was eight years old and was paid to baby sit. I have advanced in my career, and continued my education, resulting in an income, and income taxes, that have always been higher than average norms. Up until seven weeks ago I was a productive, active member of the community. I’m someone who’s been priced out of the individual health insurance market due to a pre-existing condition. My last employer, a major health insurance company, hired people through a staffing firm or 1099 contracting and did not provide benefits. This type of staffing is common in Arizona and has grown across the country during the recession.
Today I’m fighting cancer, have been bankrupted by the illness and have been placed on Arizona’s version of the Medicaid system so that I can live. You can call me your neighbor in need and be grateful for the support, or you could choose to disparage me and call me one of those “welfare people. ”
Yesterday, the topic of healthcare reform came up while the nurse practitioner was “treating” me. She said that her solution for the problem was to “make” those “welfare people” go get a job, “at McDonald’s if they have to.”
Some days the ignorance and attitudes of people get to me and make me sicker than the cancer. Yesterday was one of them. Today some friends are participating in a protest event related to healthcare reform. They know that what happened to me could happen to any of us. I truly appreciate their support, and I may call on you for some bail bond money if any of them get arrested.