Over the last several days, I've been slowly wrestling with the possibility that the anemia is forever. That it's not a matter of making sure I get enough of the right kind of iron, that this is not a thing I can eat my way out of. That something is wrong with me beyond my ability to maintain my own health myself.
Two weeks ago, I had what I thought was the last hematologist appointment for half a year. Everything looked good, she said, hemoglobin and hematocrit numbers holding steady. My color is back, my energy is up. My hair and nails have been growing much stronger and thicker, my skin is better, and I just, overall, feel healthy.
Then, Monday morning, I got a call from the hematologist's office. My serum iron is in the 30's (normal is 50+) and my percent saturation is 9% (normal is 12). Four more infusions. Four more lost days of work. Four more trips to the chemo lab to sleep away three hours in a Benadryl haze. Four more anxious moments as I watch the first injection of the iron solution, knowing that if I have a reaction this door may be closed to me forever. Four more weeks of my body pulling energy away from cognition and motivation, to turn the glut of iron into healthy blood.
What the numbers mean, by the way, is that I'm walking a tightrope of deficiency. I have enough oxygen in my blood *now*, but one false step and I don't have the reserves to cover it. One bad nosebleed. One nasty cut while slicing vegetables, and I can't replace what will wash down the drain. And as the cells die, I'm at the very edge of being able to replace them.
Through it all, the anxiety. Is this just what my life is now? Semi-annual injections of something the entire rest of the world can get from a spinach salad or a hamburger? Watching for the pica, the shortness of breath, the cracked nails and the diminished energy, all the little ways my body tells me it's failing? Second-guessing every groggy morning and every brief moment of chill? Looking, every time I miss it, for a new metric that would have warned me? Accepting, after each episode, that that wasn't the right way to track it. Even a home iron test wouldn't have found this; it tests hemoglobin and hematocrit, which were fine.
Adding 'hematocrit' to my spell checker, because it seems I may need to be using it a lot. It suggests 'crematorium' instead. No, thank you, spell check.
The scariest thing a doctor can say to you is "I don't know why this is happening to you, and I don't know where else to look." I have no symptoms of deeper problems, no signs of cancer or internal bleeding or failing bone marrow or my liver gone rogue, mad with the power to destroy blood cells. That would be reassuring, except...I have no symptoms of anemia either, and I seem to have that.
Feeling simultaneously betrayed by my body, which is refusing to conform to the agreement we made in which I will give it good food and exercise and it will function as I need it to -- and compassionate towards it, because I can feel myself *trying* to compensate, to keep up, to do what is needed with what I have. It really doesn't help that within five minutes of the confirmation phone call, I started feeling cold and dizzy and weak. No, I told my feet, I can feel you just fine, dammit. This is psychosomatic and you KNOW IT so stop it!
The thing is, anemia doesn't kill you, because it's resolvable and treatable. It's not a thing people really die from, because iron is easy to replace, until it's not. Once you have a reaction to the iron treatments, your options become very limited. I've been in the lab, once, when someone started to have a reaction. He said, "It's swelling. It doesn't usually swell like this. Is something wrong?" I drifted into the Benadryl haze about that time; my last conscious thought was a panicked glance at my own injection site. When I woke, he was gone. I don't know where he went, or what his options are now. I asked, once, what if I can't have infusions any more? The nurse looked away and said, "Don't worry about that right now. Just focus on getting better."
The part of my brain I call Traitor Brain is having a field day.
"You're broken," she says. "You have bad blood. There are secret things wrong with you, things you should have seen, but now they're going to kill you and you're missing the significance of the only warning you're being given. This is your fault, for all those years when you couldn't get a job that gave you insurance. You'd already know what was wrong, but you were too busy being a fuckup to have the stability to find out."
She also says, "Get over yourself. This isn't a real illness. This isn't a thing. You know people with real things. They have real, bona fide illnesses and you're, what, a little chilly? Put on a fucking sweater and tough it up. Look around that fucking chemo lab and then say you're afraid with a straight face, that you're dealing with anything even close to what those people are facing. You should be ashamed of this, it's stupid narcissistic weakness."
I know that Traitor Brain is a bitch and she wants me to fail. That's why I named her that. I've had her on the run pretty well the last year or so, and she's trying to make me pay for it. I repeat her words here, because when I say them out loud I can hear how full of shit she is, but when she's hiding in my head, those insidious whispers are self-reinforcing.
There's another voice, too. It says, "Um, what if there's nothing wrong with you? What if this is just...how you are? How your body works?" I have started finding things on web searches that say that with steady hemoglobin levels, lots of women function fine with a serum iron in the 40s if they're not having any symptoms. That's not far from where I am. It's possible, remotely, that I am at a confluence of 'does not absorb iron well' and 'turns serum iron into hemoglobin VERY FAST' so that what looks like cruising disaster is actually my normal state of being, and my crises were triggered by something as simple as "eating a heavily vegetarian diet without noticing." This is where the lack of insurance comes in. I have hemoglobin levels from 10 years ago, and they were low, but I've never really had regular serum iron tests when I was healthy. I have no baseline, just the last several years of extremely problematic hemoglobin levels. And in the absence of that baseline, the doctor treats what she sees, and what she sees is blood on the dangerous edge. I'll talk to her about the possibility of it, and she's been very receptive, but "I think this may be an OK place for me to be as long as I'm careful" is going to be a hard sell.
I've wrestled with talking to the people in my life about all this, this week, but there are so many people who are important to me, that I knew I'd have to have this conversation too many times, and I'd forget things, or get angry when the same suggestion came from five people who didn't know I'd already addressed and considered it.
The long and the short of it is that while I've always considered my depression a chronic condition, it was something that I didn't really need medical intervention to manage. It's been something that just *knowing* about seemed to help. But this is the first time I have fully had to face the idea of the anemia as a chronic condition, one I must maintain with medical treatment, instead of an occasional one. I can no longer shrug it off as "I should eat more steaks!" and ignore the possibility that there is something to be concerned about. That's been really hard for me, this week.
And let me say one last thing: every hemogoblin joke, every Magneto reference, Every goofy picture of iron toys, every offer to staple things to me because "every little bit helps, right?" is a blessing. Making light of this is helping me, tremendously, navigate a very difficult and scary course. My twisted, disturbing, irreverent and loving friends continue to remind me that I have chosen to fill my life with the right people.
I love you all.
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