Monthly Archives: October 2015

He laughed. I danced.

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The phone didn’t ring or vibrate, but I walked over to where it sat on the kitchen ledge, anyway.  My partner rolled into the climax of his post-work-week story, unaware of the 6th sense that had drawn me away.  I glanced down and stopped breathing.  It was 5:21 on a Friday, and “Colorado Children’s Hospital” was scrolling in illuminated text across my phone’s darkened screen.  It could only be Adahlia’s hematologist.

I hesitated.  It might be better not to know.

I snatched the phone up before the call went to voicemail.

“Hello, this is Erika,” I said, leaving my partner and the kitchen without a word or gesture.  I stepped briskly towards the front porch.

“Hi, Erika, this is Dr. N.”

“Hi, yes, good to hear from you.”  Was it?   “Are you calling about the MRI results?” I continued.

“Yeah, I’m glad I got ahold of you.  I just got back from radiology and discussing the MRI.  I wanted to catch you before the weekend.”

“Oh, okay,” I said.  He was discussing the results?  My casual tone belied my anxiety.  I pulled the phone away from my ear to make sure the volume was up.  I could hear Adahlia shrieking as she wrestled her dad.  The screen door shut behind me.  It was just me and the news.

“Well, there’s some good news, and news that we can’t really trust right now, so I just want to warn you about that.  We need to have it re-analyzed.”

“Okay,” I agreed, my heart pounding. I poured my attention into the phone as intently as as trapeze artist stares towards his partner’s outstretched arms.  Would his words catch me?

“The good news is that the liver’s looking good.  If you remember – I’m sure you remember – her liver iron overload was measured at 9.x.  And the lower the number, the better for the liver; the heart is the opposite.”

“Right, yes.”  The good news is the liver?  Oh no….

“Well, the liver imaging came out really clearly, so there’s no doubt about the new number, and its 6.x.  So that’s really good, and that’s something we can point to and say, ‘Alright, chelation is working.’  I think it’s really positive; its a really strong trend downwards.”

No! The heart’s not better?!  Focus.  Focus on the liver.

“A drop of 3 points in 6, 8 months is on par with what we might expect on this dose of chelation? Or is it better than average?”

“It’s good.  It’s on the high end of what we could have hoped for.  We’re definitely on track getting the iron out of the liver.”

I exhale.  “That’s great,”  I say.  And I mean it.

“It is good.  I’m really happy with it.  It’s a great decrease, especially for an oral chelator.”

Because the intravenous chelator works better.

I take a breath.  “Well, that’s great to hear.  Especially since the pictures were so clear, so we can be confident in it.”

“I agree,” he says.

He takes a breath.  I don’t.

“So, the heart.  As I said before, I’m not as confident in the results on the heart, because the pictures were a little blurred again.  Last time, they gave us this really low number for the heart, and then, because it was blurred, they said it maybe wasn’t quite so serious as they first said.  So we went from considering it a RED situation, to well, a little less red.”

“Right, it was 4 milliseconds.”

“Right.  So potentially really serious.  So, I don’t want you to get too excited, because maybe this isn’t quite as good as they are reporting.”

Wait… excited?  Good?  

My inbreath catches and comes in tiny spurts, like a little songbird’s heartbeat.

“They’re saying that its a normal heart.  And that’s just not believable.”

I might fly away.  I step quickly down the front porch steps, as if pulled by a rope, as if to seek better reception.  But I had heard him just fine.

“Normal?”  If word selection is a game of pick-up-sticks, an echo is all I can come up with.

“Right, basically, they are saying that there’s no iron it.  Which you and I know, given her last images, is just not very likely.”

I surge joyfully upwards.  Like a hot-air balloon, I need something concrete to tether me.  “As in, the report came back above 20 milliseconds?”

“Yes.”

I want to scream and cry and jump and laugh.  But I force my smile together and draw my mind through my emotions like a laser, like the West-Point-trained military officer I used to be.  I demand answers from my people.

“Are they aware how bad it was before? Have they seen the prior images? Have they compared them?”

“That is why I went down there.  I just got back from talking to them and showing them the last report.  They are going to re-analyze the images and re-run the calculations.  There is blurriness to the pictures, and I’m just not comfortable with these results.  The situation in her heart is most likely improved, but, not to be the negative guy, I just don’t believe that its normal.  Its just not believable.”

Because the heart is the hardest organ to get the iron back out of.

A moment of silence passes between us.  I am walking down the sidewalk, headed towards the busy avenue.  I stop.

“So.” I say, choosing my words carefully. “What you’re saying is:  The worst case scenario is that things are better.”

He laughs.  And it is an amazing laugh.  How often does a pediatric hematologist laugh this sort of laugh with a child’s parent, a laugh without sadness or edge to it?  “Yes,” he laughs, “the worst case scenario is that things are better.”

My eyes tear.

It is the first truly good news, the first real positive trend, the first actual news of improving health, with real numbers and real time behind it, that we have heard in – literally – 3 years.

“Well, that’s great news,” I say, and my voice has a smile in it.

“Yes, it is.  Even if her heart’s not all better, I think we can all be really happy with how far things have come.”

I consider all the moxa I burned over the summer on her body, when it was too hot for her to sleep with a shirt on in our wonderful, non-airconditioned, cabin-like house.  The points I had chosen for her heart.  The mystical points just medial to her scapula, indicated for restoration of “vital organs,” ancient points discovered by ancient monks, points that I poured over in my texts and spoke to Joe about in the heat of summer evenings.  I consider the moxa I had recently applied to these same points through her pajama top, now that it was cooler, using the Tiger Warmer tool.

I consider how I have finally reconnected with my Reiki Master lineage, whom I had lost touch with ever since my own Master died, and how I had appealed to them to send healing energy on my daughter’s behalf, to help her body get the iron out of her heart, to help it make it’s own blood.

No, I didn’t think moxa and prayer was fully responsible for getting the iron out.  But I did think it was possible for the moxa to direct the energy of her body to her heart, and draw the chelation medicine towards her heart, and help her body focus on clearing and healing it.

“Well,” I say, pivoting and turning back towards our house, “I know its not really believable to you, but it just might be possible.  I’ve been doing some very focused work on her heart from the chinese medicine perspective.”

And there are lot of people praying for her and sending her light energy.

“I know you have.  And this speaks to how much you’ve done, and to patient compliance with the oral chelation, so I think its something you can be proud of.”

It’s so nice of him to say these things.

Except we’ve been compliant with the oral chelation since we started it, since she was 18 months old, and her iron overload only got worse.  So it’s not about patient compliance.  Perhaps, you mean, the importance of proper dosage.  Perhaps the initial dosage was too low.  Perhaps, as some suspect, too low of a dose actually leads to increased iron deposition, instead of iron chelation.

I’ve made it back to the front porch.  Adahlia is standing there, picking leaves off of the vine that winds through the railing, and her dad is looking at me with interest.

“Well, I want to keep her on the oral chelator at this dose.  Until the liver is also clear, until we see that her organs are completely clear, I want to keep her on this dose,” I say.

“I agree,”  Dr. N. says.   “I don’t want to make any treatment decisions – including any decisions about steroids – until we get better results back on the heart.”

Ah, I think.  But I made an agreement with myself, and with Joe, just a couple nights ago on this very porch, before we knew the results of the MRI. When Joe had asked me, hypothetically, what we would do when we learned the results.

I had announced: “If her heart is the same or worse, we will do a steroid trial.  No question about it.  We have to.  And if her heart is clear, we won’t.  We will keep transfusing.”

He had shaken his head.  “But,” he had scoffed, striking a stick against the railing, “that won’t be the case.  It’ll come back saying something in the middle.”  Something requiring a tougher decision.

“I know; you’re right.” I had sighed, looking out at the empty street.  A few yellow leaves blew by.  Nothing has been clear or easy for us.  Why should this be?  “We will just have to make that decision when we get the news.”

And as Adahlia likes to say:  And now, here we are.

Dr. N. doesn’t know it yet, and he won’t be happy about it, because he wants to try the steroids.  But as long as her results for her heart remain negative for iron overload, we aren’t going to do a steroid trial.  Her recent MRI shows an unbelievable result.  It is so unbelievable I take it as a pretty clear sign from Spirit that we should keep on our trajectory, that we should keep doing everything we can to find a cure from a natural and oriental medicine perspective. Steroids are still not right for us, at least not right now.

After all, if the moxa worked for the heart (and I really believe the moxa is primarily responsible for helping the iron chelate it), it can work to heal the bone marrow.  The trick will be, as it has always been with acupuncture, to find the points that will work.

After hanging up the phone with Dr. N., thanking him for calling us so late on a Friday afternoon, I relay the news to Joe.  He sits very still in the motionless rocking chair while I speak.

When I am done, he doesn’t laugh.  He doesn’t even laugh when I relay the bit about the worst case being that things are better.  It’s been too much of a roller coaster.  He can’t laugh.  He knows that Monday he may find out he should be crying instead.

And truth is, I can’t really laugh either.  Not lightly.  Not freely.

I can smile, though.  And break into spontaneous dance.

So I do.

Dear Cherry Doctor

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I get it.

You’re filled with good intentions and positive motivation, tempered only by long hours of clinic where your intelligence is constantly questioned and abilities doubted, after years of an exhausting and mentally challenging curriculum that you’ve managed to survive by sacrificing your social life, your youth, and your formerly skinny body to study sessions, a collection of notebooks and highlighters, and a regimen of coffee and chocolate.

When you tap on our clinic door and step inside with your smile and spiral-bound clutched to your chest, straight blond hair and wire-rimmed eyeglasses, you’re hoping for a positive interaction.  One that makes you glad of what you’ve sacrificed.

But this is the Center for Cancer and Blood Disorders at a Children’s Hospital, and everything about you pisses me off.

My 3-yr old daughter is coming out of anesthesia for an MRI of her heart. She’s got dangerous amounts of iron accumulated in it from so many life-saving blood transfusions, and right now, she can’t walk.  She can’t really even sit up.  She won’t eat.  She won’t drink.  She’s spent the last 40 minutes howling inconsolably to “go home,” refusing treats and distractions of every kind, but we can’t go home, because she needs another life-saving blood transfusion that’s going to pour more iron into her overburdened heart.  She sees you enter and automatically greets your perkiness with the sort of authenticity I can only dream of: “Stop talking!” She shouts. “Stop talking, Stop talking, stop talking, stop talking,” she intones.

So you and I step outside the curtain. We can still hear her repeating her unhappy mantra.

And you begin asking me stupid questions.

“She’s not feeling well coming out of the anesthesia?”

“No.”

“I’m sorry.”

“Yeah,” I reply, with a tight smile.  

Because you have no idea what it’s like to sing “Twinkle twinkle little star” over your daughter as her eyes grow big and panicked at the toxic-smelling gas, as you see her torn between wanting to trust you but starting to get scared, as she coughs and struggles for focus as you choke on the first word of the next verse, and quickly swipe away escaped tears (you didn’t want to cry! you wanted to be strong!) because you don’t want her to think anything’s wrong, and so you gather courage and stroke her hair and sing: “When the glorious sun has set, when the grass with dew is wet, then you show your little light, twinkle twinkle all the night…” And her eyes flutter unfocused and legs twitch as she stops fighting, and you hesitate to stop singing but now she’s sleeping, so you kiss her temple and leave, only to be called back into recovery to hear her screaming for you, IV in place for transfusion, anesthesia heavy on her breath, and she’s so out of it she doesn’t recognize you, even as you hold her and say, “it’s me, it’s mama, I’m here,” and you know she shouldn’t remember anything of the loud, rumbling, tunnel-like machine, or how her determined diaphragm needed extra drugs to be forced to quit, so they could hold her breath for her, and the MRI could take clear pictures…

Did she dream of being suffocated?

“She’s really low in blood,” you, the cherry doctor, inform me. “Hemoglobin of 6.9. Did you realize she was so low in blood?”

My eyes narrow.  “Yes,” I hiss.  The entire first floor of the hospital realizes she is low in blood.  Everyone in the lobby, waiting rooms, admissions, gift shop, coffee shop, cafeteria, valet, and garden area realizes, at the very least, that she is very, terribly distressed.

“Well, I mean…” you stumble.  “Has she had symptoms of low blood?”  

I am shocked by the stupidity of your question.  Of course she’s had symptoms of low blood!  She’s having them right now!  You interpret my dumbfounded expression as not knowing the symptoms of low blood.  You begin to list them.  “Irritability…” you suggest.

“Yes!” I cut you off.  You scribble something, likely ‘irritable,’ in your spiral-bound notebook, and it could mean me, but I know it means my daughter.  Your attempt to be clinical increases my fury.  You’ve memorized a few descriptor words to slide into your differential diagnosis.  Do you have any sense of their meaning?  Do you know what it’s really like to live with an anemic toddler?  No!

On the other side of the curtain, my daughter is still complaining (her blood for transfusion has not yet arrived) and I know her liver is also complaining about needing to detox all the anesthesia, but not having enough hemaglobin to do it.  I want to go to her.

“She has been irritable.” I snap. “Fatigued. Sleeping more. Pale. Not eating.  Not sleeping deeply or well.”  All the classic symptoms you’ve memorized but have never experienced, you ninny.  “I would’ve transfused her last Thursday if it weren’t for the MRI today,” I continue sharply. “We needed to do them together.”  I can’t help it.  Every word I speak is an accusation.

“Oh, right, ok.  Is she on any medications or supplements besides the iron chelator?” you ask.

And I’m about to lose my shit.

“She is on whatever you have in your notes.”  This isn’t my first rodeo, Cherry Doctor.  You aren’t the first Cherry to pretend you don’t know what she’s on!

“Oh, ok. So how much leucine is she taking?”

I take a deep breath and dive in. “Approximately 430 mg 3 times per day in milk, but she doesn’t always drink it all and I won’t force her on this one, so it’s sometimes half or a third that amount.” I am talking as fast as a horse race broadcaster. I step one step away from you.  You sway towards me.

“Oh, ok… and a… Chinese herbal … is it a solution?”

Cherry, you have no understanding of Chinese herbs. No education in them. Don’t know what they can do or don’t do. Don’t know how to dose them. Can’t even pronounce them. (I barely can.)  And you probably have all sort of ignorant opinions on how dangerous they are.  

I’ve discussed these herbs with my daughter’s regular, attending doctor.  I’m not about to discuss them with you.  And then another cherry next month. And then another.  At this point, I know the drill.  I know that I know far more about my daughter’s rare blood disorder and the world-wide treatment approaches than you or most of the other “specialist” cherry doctors will ever know.

“Yes. And no. It’s an herbal formula.” Again, I move to walk away.

“How much are you giving?”  And I’ll give you persistence.

“3 grams, 3 times a day,” I sigh in exasperation.   

And I know that doesn’t actually mean anything to you.  You wouldn’t know if that was high, low, or perfect dosage of a formula.  Because you don’t even know the names and dosage for the herbs in the formula.  You don’t even know what to ask me, that’s how little you know.

“Well,” you say, desperate to re-engage me in a way that restores your authority, “we won’t get the results of the MRI for a day or two, but when we do we will let you know and we can talk treatment decisions.”

No, Cherry Doctor. You and I aren’t making any decisions about anything.

But, “Alright thanks,” I say, dismissing you, and I slip back behind the curtain and onto my daughters hospital bed.  She’s got Disney’s “The Princess and the Frog,” playing, though she is too upset to watch it.  She immediately calms and quiets upon my return.  This time.

Cherry doctor, I know you will return later this afternoon, to put your stethoscope to my daughter’s heart (though it will tell you nothing useful) and palpate her abdomen (and that action will be fruitless and unhelpful, too).

The truth is, Cherry, you have nothing to offer my daughter.  The researchers who created safe blood transfusion and developed iron chelation medicine, the every-day heroes who donate blood, and the nurses who needle cleanly and swab with sanitization: they save my daughter’s life every month.  At this point, you doctors are almost useless. You have nothing to offer.

Especially you cherries.

You see, doctor, I know the truth:  my daughter is actually helping you. Educating you in rare, incurable disease.  And I’m kind of sick of doing it.

So maybe take a lesson from my daughter’s regular, attending hematologist.  He is relaxed. He is thoughtful.  He isn’t recording numbers and symptoms in a notebook as if it’s the sum of my daughters existence, as if he can quantify her and pronounce a verdict. No, he spends most of his time with us – 80 or 90% of it – talking Disney princesses.

Why?

Because he knows it’s all he can really offer.  With my daughter’s blood disorder, treatments are all probability and weighing lesser of evils.  He won’t walk in one day, feel her belly, listen to her heart, and exclaim that he knows how to cure her.  Talking princess is, really, all he can do.  It’s how he can best help her.

We will probably never see you again.  So, good luck, Cherry.  Yes, the moment you popped in, your very presence pissed me off.  You were doomed from the start.  And I made your rough day on this particular rotation a little tougher.  I don’t feel bad about it. And I’m not sorry.  But I don’t wish you ill.

I hope you learn well.  I hope you learn the human and clinical aspects of disease.  I hope you find balance and satisfaction in being the provider of treatment, the healer, and the humble side-liner, the helpless witness to life.

I hope that next time you’ll get assigned to an easier case. Or at least, an easier mom.

And most of all, I hope you don’t give up.  I hope you stay persistent, and that maybe, someday, you do help cure a rare disease.  No matter how bad it gets. How futile it feels. How unappreciated you feel.  How powerless and angry and sad.  Don’t give up.

Because I never will.