I’m lying next to Adahlia tonight as she’s already fallen asleep and I can’t. I’m too ramped up. I’ve been exchanging emails with her latest hematologist and as I’m lying next to her, in the dark, I hear myself vowing aloud to the room:
“I am determined to help you. I will find a way to help you.”
Signs. You see, one of the first things you learn in medical school – of any medical tradition – is the difference between signs and symptoms. A sign is something observable, that the doctor detects, like a fever, and it’s typically considered objective. A symptom is something the patient reports, like “I feel hot and cold and loopy all at the same time” and it is typically considered subjective.
There have been a slew of recent signs regarding Adahlia. First, at the last transfusion, in January, her Ferretin was back up from 750 to 900. Ferretin is used as an indicator of iron overload, but it also rises in cases of inflammation. There are no conclusions to be drawn yet – it could be that the Exjade medication isn’t working, or it could be that the fresh juicing we are doing with our brand new Champion 2000 juicer (Merry Christmas from Mom and Dad) is temporarily raising inflammatory markers as it clears out her system. (The juicer matters, apparently, when it comes to juicing. It makes sense now, but a year ago, I thought juicing benefits were juicing benefits. Nope! Big difference. The juicer matters.)
Second, we did another nutritional analysis on Adahlia. Some good news: some nutritional deficiencies were corrected. Others seemed not to change. Others worsened. And: new deficiencies appeared.
It’s most frustrating.
I’m still trying to discern a pattern. One interesting thing to note is that most of her vitamin and mineral deficiencies can be sourced in her current favorite foods.
??? I know. It means that she’s either not absorbing her food properly, or that she is drawn towards the food her body needs most, in an unconscious attempt to correct her problem, or both. Either way, she’s eating mostly what’s she’s deficient in, and yet, she’s deficient.
The most intriguing sign, however, right now, is the one that says that she is still deficient in vitamin B12. Her nutritional analysis last year said the same thing, and so for the past year, we have been supplementing her heavily with B12. For a year. I’m talking heavy. And she’s still deficient!
This is bad. B12 is necessary for building blood. A chronic lack of B12 can lead to permanent nerve damage. It’s an absolutely vital nutrient on a systemic level.
What’s interesting is that Adahlia’s red blood cells, the few she does make, are macrocytic, meaning they are extra big. Macrocytic red cells are caused by B12 deficiency. So is her anemia partly due to a lack of B12?
What’s confounding is that macrocytic red cells can also be a trait of DBA. And the difference between the anemias is supposedly pretty clear when looking at a sample on a smear.
What’s also interesting is that I was B12 deficient after several years of being vegetarian, and required monthly B12 injections for awhile in order to get my body back into balance. I suppose I would again become anemic if I don’t eat properly — ie, foods rich in iron and B12. And Adahlia is a self-imposed vegetarian. She simply doesn’t like red meat, and barely touches poultry, though she will occasionally eat fish.
So we have a bunch of signs, a lot of them flashing “doom” and “look at me!” and “get worried!” But I’m not. Yet.
I’ve asked her hematologist to consider IV B12 administered before or after transfusion, since she might have an absorption issue, and it’s such a vital nutrient. He’s baulking a little, and has agreed to retest her systemic B12 and go from there. I think he’s just a little intimidated. That’s ok.
The bottom line is that her cells don’t care what we call it. Macrocytic anemia, Diamond-Blackfan Anemia… The bottom line is that she appears to be chronically deficient in a vital nutrient, a nutrient necessary for building heathy blood cells, among other things.
Would adequate B12 help her produce her own blood? Would it normalize her cells? Maybe. But the DBA issue isn’t actually my focal point. I want her nutrition analysis to come back normal. I want her to show adequate amounts of everything vital in her system and then, if she still has DBA, if she still needs transfusions, okay. Then we can look at fixing that. But there is no way you can expect anyone to produce their own blood and be healthy if they are chronically deficient in vital nutrients like vitamin B12, calcium, selenium, and serine. Without such things, you simply won’t be your optimal you. You have to have the nutrients you need in order to well… umm… live.
And so that’s my goal. I want her to be nutritionally healthy, to have everything she needs to build what she needs. So that even if she has anemia the rest of her life, and needs blood transfusions, she will still be able to be her optimal, healthiest, happiest self, because she has the necessary nutritional building blocks.
Two nights before my birthday, I had a sign of a different sort, the sort of sign my very spiritual, and mystically inclined friends, would appreciate. And so to balance all the scientific mumbo-jumbo, I’d like to share it with you now:
I dreamed I was at West Point, the me I am now, but I was in my Firstie uniform (Senior Cadet, high ranking), so no one bothered me. I was looking for two of my friends, and of course, everyone there were the cadets of today. Companies were in various formations throughout the Cadet Areas. The companies in Central Area were in Battle Dress Uniform (fatigues), and so was I. They were loading trucks, wearing kevlars, wearing LBEs, apparently getting ready for the field. Bamboozled plebes were standing in formation as upperclassmen shouted orders at them. Walking briskly past the groups, I passed a solitary Army Major walking the opposite way – I almost didn’t see the little gold leaf insignia on the Kevlar that identified the active duty officer from cadets. I had already taken a couple steps past the officer and cringed inwardly, then executed a quick, if sloppy, about-face before the Major could decide that he was annoyed and should correct me on my lack of observation. I saluted. “Good afternoon, sir!” I said automatically. “I apologize for not seeing you!”
The stout major had a pretty face.
“And I apologize, again, ma’am.”
She looked like someone from my more recent years, a mentor from a different school.
“Do I look like a man to you?” she said.
“I’m so sorry, ma’am.” I grimaced. “It happens to me, too,” I added.
She grinned in camaraderie and waved me on. I entered the nearest grey granite entryway, which should have opened into Washington Hall, the Cadet Mess Hall, but instead opened into a barracks, the interior walls painted the familiar, oddly-chosen bright, blue-green of Pershing Barracks.
The stairwells were full of cadets, and these ones were in Full Dress, as if about to go on parade. Strangely, they stood in formation on the stairs, row after row, locked at attention while the senior cadet training officers combed the rows, looking for anyone even slightly out of place. I was in my Full Dress too, complete with my Training Officer stripes. I passed by without anyone noticing, naturally. A glance told them my rank and status. They had jobs to do and more important matters on their minds, like the respectability of their companies. They assumed I was on some errand.
And I was. I sought my friends. One of these friends was Joe, and one was his friend (actually, a mutual friend) from our WP days. I had just left them, or rather, they had left me, after I told them I’d catch up.
I was sweating in my Full Dress – I had forgotten how hot the wool gets, how the stiff, starched false collar cuts into my neck, how heady and muggy the non-air conditioned hallways get, especially when the plebes are stressed and the upperclass are hazing. I wiggled my arms inside their wool sleeves to encourage airflow.
I took the stairwell up to the roof, and was astonished to find myself outside in another North Area. The sky was pink and orange like sunset.
“How did they put another North Area on top of North Area?” I wondered.
But this North Area was different than the other one below. Instead of a sea of asphalt, the large area surrounded by granite barracks was a field of grass encircled by a sidewalk. The grass was fenced off by a single rope, more of a suggestion than a barrier. Inside this barrier, there were goats and llamas and strange similar beasts, grazing on the grass. An older woman tended them. She wore simple, heavy, clothes, a native or indigenous woman from a time long ago, or a place far away.
As I gazed upon the animals, she spoke to me.
“Ahh, but he’s the pretty one,” she said, gesturing to one of them.
A strange llama-like goat-like animal tossed his head and stepped towards me. He was no bigger than a large dog, with very large eyes, and a large alien-like head, and his fur was brown except on his head and neck, and there it was green. He was odd. But pretty, yes, in a strange way, with a strong spirit.
I suddenly realized I could ask this woman for help. I turned to her.
“How will I find my friends? Which way is my quest? Which way is my path?”
I knew I would ask the first question, but the second and third spilled out of my mouth, surprising me.
She smiled and began to move, but I could not hear or see her. Everything was turning white.
I became aware that I was lying on my back in the dark, a point of pressure on the tip of my nose. Eyes still closed, I came fully awake as I realized that Adahlia was touching my nose with just the tip of her finger. Her even breathing told me she was still asleep. After a while, she dropped her hand to my chest, just under my neck, her fingers and thumb making a natural “v” at the base, on my sternum. As I lay there amazed, barely able to believe what was happening, and not wanting to break the spell, she somehow slid her other arm effortlessly underneath my back, palm directly opposite her other palm. Energy flowed between her two hands. She had answered my questions. She was strengthening my heart. This tiny little being, in so much need herself, was helping me.
Now, I don’t know a lot.
But there are signs everywhere.
We just have to notice them.