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.

Thanks for nothing, Max. When I heard about your bill this morning I was mildly pissed, because I knew you would water everything down so that something “passable” would happen and it would have no effect on anything. And then everybody would say “you see,” we should have left things alone and let the free market fix it.

Americans, you are dreaming. The free market doesn’t operate anywhere in America, least of all in health care. And while I counsel entrepreneurs and trumpet startup ventures all day long, I do tend to love the ones that are out to change the world rather than just to make a buck, although my first question to anybody who requests a meeting with me is always “how are you going to monetize that?” It’s why I love Health 2.0 and patient empowerment and personal health records.

And why I now hate politics. In the effort to please everybody, Obama, Baucus, indeed everyone iin Washington except maybe Ron Paul, has sold themselves down the river. You mandate insurance, you cut off the subsidies at $60,000 for a family of four, and you neglect to mention that this year insurance for a family of 4 costs over $13,300. This is the tenth year in a row that the cost of insurance has outpaced the growth of wages. That’s about 24% of the income of a family just above the cutoff. And if they neglect to buy the insurance, there’s a fine of $3800. What good does that do?

But in Washington they are playing only a numbers game. Hit Obama’s number of $900b. Hit the 60-senator number to block a filibuster.

It isn’t about numbers, though. It’s about my partner in this blog, Karoli, whose son has Ulcerative Colitis and Type 2 diabetes, which he has just acquired, but which will be pre-existing conditions he will take with him for the rest of his life. He is now uninsurable. He’s 20. He did nothing to deserve this; he has hardly finished growing up.

You can hear Karoli’s moan in her post on Momocrats:

So, Senator, what do we get from you? A pile of crap wrapped up in pretty red Republican paper with a little bipartisan bullshit on the side.
Imagine having to face not doing what you love, what you were gifted for, because it means medical bills will always dog you.

Imagine having to make a choice between talent and health.

Imagine having to give up what you’ve been passionate about for over one-half of a short twenty-year old life.

Imagine having to choose. Imagine having YOU CHOOSE FOR ME.

Your pathetic effort to appease the unappeasable just rendered you irrelevant. Step back, get out of the way, and let your colleagues who actually understand this is not a game of “richest lobbyist wins” get something done.

Bipartisanship is not an option here, by declaration of the teapartiers, the birthers, the tenthers and all the others who have no balls or courage to answer this problem with a real solution. My son cannot live on rhetoric. He cannot build a life or a career on your lack of courage. If and your buddy Kent Conrad think it’s a good idea to cater to the money guys, that’s your problem. Don’t make it mine. You had your chance to do this right. More than your chance. We put up with the lunatic town halls, insane finger-biting incidents, and racist drivel so you could have your chance. That’s done now.

Get out of my kid’s way and let the big boys forge a realistic pathway for him to work toward his goals. He has been a taxpaying contributing member of society since he was 14 years old. He pays his own way through school with no loans while remaining on the Dean’s list and representing his college at jazz festivals around the state. At the ripe old age of 20, he deserves a better future than indentured servitude to an employer with a health plan and a Senator planning his retirement on insurance company payrolls.

I don’t know how to help her, except to get out my big pen and my big bottle of ink and write.

And then there’s my friend Pat, who was diagnosed with leukemia last week, laid off (from a health industry job) and uninsured. Gleevec is the drug she needs to stay alive. She picked up the first month’s pills today at the pharmacy. Cost: $4499 for 30 pills.

Luckily, she’s on Arizona’s version of Medicaid right now because she’s unemployed. But this means she can never go back to rewarding work, which she wants to do, because she can’t earn enough to jeopardize her Medicaid. Insurance will rule her life, too, like it rules Karoli’s son’s.

God blinking dammit, Americans! Don’t you get it????? Why isn’t there rioting in the streets? This should be life and death. It IS life and death. It is not about “free markets,” which I have never seen in my 68 years on this planet.

I feel like a cross between Glenn Beck and Keith Olbermann. Forgive the personal rant.