Friday, December 14, 2012

Green Fields & Heavy Metal

I’ve been imagining my body as a field of tall green grass, an endless field of fecund sprouts and wheatgrass below a stone still sky. This place is inconducive to cancer. Any stray adverse cell that wanders in is engulfed by my lush green grass, disintegrated and harmlessly absorbed by the soil, quietly, peacefully, easily.

A friend the other day asked if I was back to working a lot. I answered -- well, I could be working a lot, I’m just choosing not to. She asked what I was doing and I told her I didn’t really know... bopping around, visiting with people, doing whatever the heck I feel like. Actually, I have been at work a good bit, just not every minute like I would normally do and I confess to spending a good bit of my time there wandering around talking to whoever I run into and probably chatting my poor studio-mate to death.

I’m starting to cook again, I’m listening to music instead of the news, watching movies and being cozy by our xmas tree. I’m happy, I’m watching Dr. Who with my little buddy I’m living in the moment. The tall one is now 6’ 3 & 3/4”, I am 5’ 3 & 3/4” so I think he will stop growing now and be exactly a foot taller than I, there’s something poetic about that. When you look at a ruler, a foot is substantial, but not overwhelming, but when you stand next to someone a whole foot taller, a foot is huge, and when it’s your baby, well, that is something. We are making college lists... well, talking about making college lists and procrastinating the actual list making. Dude rocked the PSAT, I just found that out a few minutes ago, my guys are both in good places, happy campers.

I’ve been feeling great, I finished radiation barely two months ago, but it feels like two years, I’ve so enjoyed my furlough back into real life, my stint on the sunny side. I saw my surgeon for a follow up a couple of weeks ago and she urged me to see my primary care doctor for a check up, to get all my blood levels checked. I was so surprised when I finished chemo, that they just sent me on my way. I asked if they were going to check all my levels and see if everything was working as it should, and I was told “no, you’re done, see you in three months” which struck me as odd, but a lot of how the practice of medicine is done strikes me as odd.

So I went, gave some blood and got the results back in the mail yesterday and well, I hate to say it, but all I can say is holy shit, they didn't look good, they were not what I was expecting. Levels are high, levels are low, but most glaringly, my Ferritin level, which is the amount of iron in my blood is off the charts. I’ve been googling like crazy and what I’ve learned is that high iron levels are called Hemochromatosis. There are two kinds of this condition, Hereditary and Acquired. Hereditary, as you would assume, is caused by a defective gene and these folks keep their iron level down by essentially, regular blood letting. They get a jug of blood drained out every few weeks or months to get rid of the excess iron, excess iron is dangerous, it can kill you. The other kind of Hemochromatosis is caused by an underlying condition or very often {most often} caused by having excessive blood transfusions. I had six transfusions within a three month period, not so very long ago, so which do you think I have? No brainer, right? Sorry, not if you’re my oncologist, I was told through the nurse intermediary because god forbid he actually gets on the phone with me, that he wants to run the gene test because he suspects I have Hereditary Hemochromatosis despite there being absolutely no instances of it in my family and I’ve had not only normal, but low iron in the past and I had six blood transfusions, I know I’m not a doctor, but please! Regardless of cause, I'm a heavy metal chic for the first time ever... literally, and yes, I might do a little head banging, albeit, up against a wall.

So while I’m reading that Hemochromatosis causes organ damage, heart failure and all sorts of other undesirable things when left untreated and my levels are definitely in the need-treatment-zone, I am expected to wait a month until my genetic tests come back before we discuss it. Are you screaming in your head too? My glucose was also high and do you want to know what cancer likes? What cancer’s favorite tasty treat to snack on and thrive is? Sugar and Iron. I’m starting to think I need more than tranquil green grass. I Might have to arm that grass with laser guns or poison darts.

I have loved, loved, loved every minute of my parole, but I know what’s coming, tests, biopsies, mysteries, another odyssey through the medical industrial complex, chewed up and spit out. I felt so healthy before opening that envelope, but now my liver hurts, my heart hurts, I know it’s psychosomatic and yes, I knew that cancer treatment is not benign, but I’ve got to admit to being mightily disappointed in, and surprised by this development. I was much enjoying my recent trajectory and most definitely did not want to veer off back in the direction of hospitals and terror, I was feeling more and more optimistic the further away I got. Yeah, yeah, I’ll be a good sport, but do I keep having to develop the maladies that require abstinence from alcohol? Because I could use a drink or two, three, four, five.


  1. You are right! I am screaming in my head about the genetic test! That is some crazy shit. Can you go somewhere else...? Anywhere?

  2. I mean, did the nurse intermediary at least say, "We know it sounds TOTALLY CRAZY AND WRONG, but we have to do it this way because x, y, z" ?

  3. Love the green field image -- crazy contradictory western medicine!

  4. katy, no... i kept saying it and she was just repeating what the doctor told her to say -- he suspects you have hereditary hemochromatosis... i think he's hoping that's what i have because he ordered all the transfusions... not that i'd be mad, i needed them, i totally get that but please, let's not play games here.

    i'm seeing a doctor i trust tomorrow and in feb. i have an appointment with a doc who is both a naturopath and an MD, he is an active participant in managing his patients health, so i can finally dump Dr. don't-worry-i'm-sure-it's-just-a-syst. i can't wait! i also have a consult coming up at dana farber, but the list of original films and slides and letters from doctors and records is so profoundly overwhelming that i might have to postpone.

    i've been thinking of you and your knowledge of blood sugar because i have to get mine down, seriously down, mine was at the top of the range... it's so hard for me to see carbs as bad if they don't have frosting, you know? bread, pasta... these seem like my friends. of course beans and meat and spinach... these are all full of iron, so i don't know what the hell to eat at this point, so naturally, i'm going to go bake cookies.

    in one of your posts, you did the best, best obscenity laced tirade, i think against the doc that wouldn't prescribe enough testing strips... so yeah, you get it. where do these arrogant fucks come from?

  5. i think you should eat ALL of the cookies and to keep your BG from going too high, just go for a walk or vacuum or move around in some other way afterwards.

    i am so glad you have this good team caring for you!

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