Hearts of Ice, Hearts of Stone, Hearts of Love

Its Adahlia’s umpteenth blood transfusion.  She’s 2 years and (almost) 10 months old.  We are watching Frozen in our transfusion room.  We’re in quarantine because she’s been sick.

It’s been 4 weeks since her last transfusion, when she had a Hb of 6.5 after 5 weeks.  In those 5 weeks, I did daily shonishin treatments on her.  My focus was the liver, in consideration of the hormonal aspects of DBA and the liver’s role in hormone production as well as its role as considered in the chinese medicine perspective.  For the first time in years, her liver enzymes were actually normal, not elevated.  I interpret this to mean that the liver was being supported, and not stressed as it normally is by the disorder, the transfusions, and the chelator drug.

I continued treating her for two weeks, then abruptly stopped.  This happened for two reasons:  first, she started refusing treatment instead of requesting it, and second, because I’ve been so busy treating myself, trying to support my kidney function.

She’s been sick since we returned from Portland.  I assume it’s because she caught something on the plane, though I’m sure the vaccine she got a couple days later didn’t help her immune system fight the infection.  (I put her on a delayed vaccine schedule so her already overloaded system wouldn’t have too many extra burdens, and with the intention of minimizing her systemic inflammation as much as possible before introducing a bunch more inflammation causing agents.  She is behind her peers by several vaccines, but she’ll get them eventually.)

Timing is everything.  Everything has a season.  The best course of action, when you aren’t sure of what must be done, is to wait and watch.  This is the art of Wu Wei – the art of doing nothing.  If you practice doing nothing but listening for when it is time to act, when it is time to act, it will be clear.  This instinct can sharpen such that you will almost seem psychic.  This is the art of gong fu.  But really, you’re just being very, very observant.

It had been time for Adahlia to have an MRI awhile ago, but the docs were reluctant because she would have to be sedated. 

She hasn’t done well this past month.  Besides being sick, she’s been sleeping a lot.  Much more than normal.  And I noticed that she was showing signs of deficiency in fire, or the heart.  

She was transfused at only 8.9 Hb today at 4 weeks.  This is good – she could have easily gone another week. But, with my surgery in two days, we wanted her to be feeling well. 

It turns out that her ferretin (a marker of inflammation that many hematologists mistakenly use for iron overload) has dropped further, to only 557.  This is great, but it doesn’t mean she doesn’t have iron overload.

Because her MRI came back with very different news.  Her liver is actually doing ok – the hematologist considered the level of iron overload to be mild to moderate.  Her heart, however, he was concerned about.  He considered the report on it to be a yellow flag.  It wasn’t an emergency, but he thought we should consider  steroids with the intent of reducing transfusions, and/or increasing her iron chelator dosage, and/or adding another chelator.  He said it warranted watching closely. Upon my inquiry, he said that meant repeating the test in a year.

Personally, when we are talking about heart failure and death, I do not believe that qualifies as a close watch. I asked what a red flag would be.  He said that as long as the Echo was normal, and the heart wasn’t compromised in its functionality, then he wasn’t too awfully worried.  But then I asked if the Echo was normal and he admitted that he couldn’t remember what it said, but that he’d probably have remembered if it was emergent.

In the medicine I practice, we do not wait until the structure or function is compromised.  We do something to prevent the physical loss.  So you can see that I wasn’t especially enchanted with his answer.

Especially when I learned that they did not do an analysis of her pancreas, even though I specifically asked them and reminded them, because it can be severely damaged by iron even when the others aren’t, and instead looked at me in surprise, saying they’d never heard of checking the pancreas for damage.

Especially when this morning, when I asked the nurse to run the labs by me, as I do every time before they draw blood, in order to make sure nothing slips through the cracks, she responded with “type and screen.”  Thats it.  No CBC.  No retic.  No ferritin.  No CMP.  Of course, I had to artfully disagree with her so that she wouldn’t feel foolish, so that hospital wouldn’t look like its left hand didn’t know what its right hand was doing.

I cease to wonder at it.  It’s just a bit tired, the whole routine.  It is like living in a fishtank.

Speaking of tanks, Joe bought me the best pre-surgery present anyone could ever give: a float.  

Floating is sensory deprivation in a small, shallow, dark, enclosed tank, partially filled with extremely concentrated salt water.  It is so salty that you become buoyant, like a sea otter.  And, like a sea otter, you float on your back.  But there are no tasty clams, no gulls calling.  It is completely dark.  Completely silent.  It is like a floating sarcophagus.

Psychologists recommend it as a healing practice.  Creatives use it to connect to inspiration.

If you’ve ever had a nightmare, and thus know the power of your own mind, it’s a bit terrifying, especially if you have any claustrophobia or hydrophobia.

I had floated once before, before Adahlia was born, but this time was much more intense, probably because these last few years have been so tough.  I actually had a series of three small panic attacks, one right after Id managed to calm myself down from the last, where I was convinced that there wasn’t enough air in the closed tank, that I wouldn’t be able to lift the heavy door to get back out, that Id suffocate in the tank and drown.  My heart palpitated and fluttered and pounded and thudded; I felt as though I might vomit or faint.

But I managed to stay in the dark water, and slowly, using releasing mantras, I began to unwind the tension held in my body and mind and began to relax.  It took a very long time.  When I ‘woke up’ to realize I was no longer holding tension or fear, I began affirmations.  (Whenever you release something, it is important to follow it with affirmations related to what you’ve released.)  By the end of the 90 minutes, I was floating peacefully and joyfully in the dark, smiling and reconnected to a self that I have not embodied so fully in years.  I felt powerfully loved by myself, and deeply grateful for my body and life.  The beauty of this opportunity was reopened to me, and I felt amazed and honored to exist in it, with so many powerful others who contribute to it.  It was so healing that I cried as I drove home, not because I was sad, but because I was so purely happy.

And then, last night, I had a strange segment in a dream during which a wild looking shaman woman recognized and greeted little Adahlia with excitement and respect.  She said to me, “She does not come here often!” meaning that Adahlia was a spirit in the higher realm that does not often deign to take human form.

I said, “She has a rare blood disorder….” hoping to get the shaman to help me with clues to treatment.

“Of course she does!” She snapped.  She meant that Adahlia did not necessarily belong on earth for a long time.

And so, when all this happened today, perhaps you can see why I was not actually upset.  

The truth is that the shaman with red fire in her blue eyes is right.

Earth is only a temporary home.  

We can learn a lot here – mostly, if we are wise, about ourselves.

And we have no real knowledge of the purpose of anything.

Today, I wasn’t surprised to learn that Adahlia is halfway on her way to heart failure.  That she shouldn’t have this much iron in her heart yet – that it shouldn’t have gotten this bad so quickly; that’s she’s a bit too young; that it doesn’t really make any sense given the rest of the picture.

We can do a lot to be healthy, to love and care for and support those we love, and between all the different medicines we have much to support us, but we control nothing.

Far from disconcerting, I find that fact incredibly peaceful.  

Of course, it doesn’t mean I am giving up on Adahlia any more than I’m giving up on myself.  It means that my observations were correct, and that her heart is struggling, and I should try to help it.  

And so I have.  And will.

And yet.

Add all the religions and spiritualities and spiritual experiences of the world together, and we have only glimpsed fragments of what exists beyond the physical.

(It might be a beautiful mosaic.)

The best we can do is move with the seasons.

To love ourselves and each other through the seasons.

To release our fear and tension and worry and discover deeper levels of what it means to be empty.

And to fill that void with light, and energy, and love.

Until we shine with it.

And fly away home.

Going for it

I must’ve started a post in my head a dozen times in the last few weeks, but I’m finally getting around to actually writing it.  Adahlia is napping now – which is rare – and though I’m tired too, I want to seize the opportunity to update everyone.

Adahlia has always loved the Happy Birthday song.  Sometimes, she’ll take a piece of her pretend cake (its a little wooden cake that came as part of a little wooden tea set).  She will set it on the table and sing the song for herself, or for Hamiya (her cat), or to some unknown friend, finishing by blowing out the wooden candle and saying “alright” if its a solemn occasion or “yayy!”  if its a joyful one.  Sometimes, she claps.

Two days ago, for the first time, she sang a song that wasn’t the Happy Birthday song. We were out in the backyard, and I was picking up fallen tree limbs.  Over on the patio, I hear her say to herself:  “jumping… dancing.”

Now, she wasn’t really singing those words. And to many people, they are just two verbs.  But I know them.  And probably there are some other folks out there who know them too — other strange people who have somehow found that they’ve memorized nearly every line to every Disney movie.  That somehow those lyrics and lines created indelible marks on the fissures and folds of their brains.  That somehow, even after decades, their neurons know exactly where those lines are stored, along with precise pitch and tone of delivery, and exuberantly race to retrieve them, while they will dally in the retrieval of the names of friends, confuse dates, get lost looking for directions and locations, misplace amounts for recipes, and otherwise make it impossible to recall the useful tidbits.

I whirled with my load of twigs and beamed.  Joyfully, I sang out to her:  “Strolling along down a… street!”

She looked over at me, surprised.  Then, running her hand along the patio chair and kicking her feet at the fallen crab apple blossoms she said:  “Up where walk, up run…”

“Up where they stay all day in the sun!!”  I sang.

“wannering fee.  wish could be.”

“Part of that world!!”

I nearly cried, I was so happy.  Her first true song.  Her first song that was stuck in her head.  Her first song that she felt a need to sing out loud.

Adahlia says four and five word sentences these days.  (“Hamiya is little b[l]ack cat.”)  With my help, she can find needed puzzle pieces and put together a 16 piece jigsaw puzzle.  (I am not a puzzle enthusiast.  But she asked me to do it with her 5 times in one morning and by the end, she was finding the pieces, rotating them, and pressing them into place.)  She climbs parts of the playground jungle gyms that make other parents look at me nervously.  (She won’t let me spot her anymore.  She tells me to stand somewhere else.)  I introduced her to the magic of the roly poly bug and the ladybug.  We spend a lot of time looking for them, as well as worms.

Just yesterday, a robin was in our yard, also looking for worms.

“Look!  A robin!”  I said, pointing.

“Robin Hood!” She replied, running after it.

Hamiya spends a lot of time in our backyard with us, jumping after insects, which has caused Adahlia to conclude that most creatures are interested in bugs and birds, including our car, and the postman.  (She loves the postman.  Just this morning, she sighed loudly and announced:  “Adahlia a little bit sad.”    Why are you sad?   “Miss postman.”)

Adahlia has apparently picked up an interest in the healing arts, which I suppose is natural, given that we do so much medicine around here.  One day, I realized that she was giving herself acupuncture.  She removes the caps of her markers and sticks the markers in her socks, so that they bleed into her socks, turning them a rainbow of colors.  She announces that she’s doing “a little atupunture”, waits a beat, and then says “All done!” and removes her markers. (And this shows you that I’m often working on my legs near my ankles — that’s where powerful points of the spleen and kidney channels are located.)

She also loves giving the cat shonishin (infant acupressure) and her dad a facerub that she calls a massage, which she follows up with a very precise and delicate poke with some sort of artifact (such as a stone or pen).  Then she stands back and says, “there.  that’s better.”  She also will pretend to open up capsules and add the contents to the cat’s toys, “add a little dub mai.”

Ah, medicine.

Medicine medicine medicine.

In seven days, I will be in an operating room while a very jovial man with an impressive surgical following attempts to locate the problem causing my kidney to backup, cut out the problem, and reattach my ureter to my kidney so that it will stop kinking up and drain properly.  He will be aided in his efforts by robots.  This is all kind of fun, in a sci-fi way.  It is not kind of fun, in the way that this is their last attempt.  If this doesn’t work, they will schedule me for a final surgery — a surgery to remove my kidney.

I have fought for this kidney.  I have fought for this kidney like I’ve fought to get Adahlia the medicines that I know she needs, and that I hope will cure her.  I have fought for this kidney since it first failed, in April 2012, when I was 7 months pregnant with Adahlia.  With the efforts of alternative medicine, including herbalists and acupuncturists, I have improved its function from 10% in July 2014 to 19% in December 2014.   (This fact, alone, convinced the surgeons to try to save it.  The surgery to save it is very expensive and rather risky, and it tends to fail more often with more interventions (such as stent placements) and lower kidney functionality, both of which are against me in this particular fight.)

This surgery was scheduled twice before, and both times, it was cancelled.  It was cancelled the first time on the day before the surgery, because my surgeon had thrown his back out and couldn’t operate.  At the time, I felt like it was a stay of execution.  I did not have a good feeling about it.  And yet, I knew it had to be done.  Miraculously, it was put off for another few months.  And then again, it was cancelled.  It was cancelled because the second surgeon had done a nuclear functional analysis of the kidney, and had discovered that it only had 10% of its function remaining, and thus, the pressure flowing through it was too low, and its ureter would probably collapse even after surgery, and the surgery would fail, and it was thus not worth the attempt to save it.

He scheduled me for surgery to remove the kidney.  I cried, and then refused to let them do it.  I told them I would try to revive it.  I switched from doing regular acupuncture to electro-acupuncture, and a lot of energy work.

I was a little disappointed that its function only increased to 19%, even though it was enough to convince a new team of surgeons in our new town to go for it.  But then a mentor re-framed it for me, saying:  “you doubled it’s function in six months.”

When thought of like that, well, that’s pretty good.

So I’ve been aiming to double it again.

I know there’s a connection between Adahlia’s condition and my own — and more than just the genetic connection, or the fact that silent kidney malformations can be part of the DBA gene expression.

I’m hopeful that if I can restore my flow through my right kidney, often associated with the “Gate of Life” in chinese medicine, that it will positively impact Adahlia’s own energy flow.

I have to stay overnight at the hospital on the night of my surgery.  I’ve been trying to prep Adahlia for this, much as I prepped her for her sedation and MRI last month.  She still co-sleeps, and breastfeeds, and doesn’t appreciate being away from me for very long during the day, much less at night.  This will be hard on her.  It will be hard on Joe.

We went to Portland earlier this month for new herbal formulas.  My mentor tested me for approximately seven different herbs he uses to treat subclinical infection, and for the first time ever, I did not need any of them.  Adahlia, however, still needs the same rare and powerful herb that we were both taking for the past two months.  The good news is that she still doesn’t need the herb for inflammation, which she was on for over a year, and he believes her brain inflammation is much resolved.  From observing her, I can attest that she seems to be sound on a cognitive level.

Emotionally, she’s been struggling.  We think she needs blood, and we plan to transfuse her on Monday, so that she has a ‘full tank of gas’ to get her through the first couple weeks when I am recovering and need my energy for myself.  She’s been sleeping a lot, which could mean a growth spurt, but could also mean low hemaglobin.  Adahlia’s nurse is wonderful, and has agreed to transfuse her at a half-dose if she’s below 10 Hb, just to tide her over through my surgery and first couple weeks of recovery, if she’s not at 8 Hb or below and qualifying for a full transfusion.  This definitely gives me some peace of mind — I don’t want to be concerned about her blood levels while recovering from surgery.  Even so, rather than risk an IV placed only to discover that they won’t give her blood (ie, her Hb is at 10), I intend to take her for a finger-prick test on Friday.  Removing the IV (pulling off the sticker from her inner arm) is sometimes just as bad, or worse, than putting the IV needle in her vein, and so I don’t want to do it to us if we don’t need it.

I just remembered that I will probably get the results of her MRI and echo next week.  (These tests were performed to check her level of iron overload, which can lead to organ failure and death.)  I’m assuming they were low or at least not at a dangerous level, since her hematologists did not contact me immediately.  (Then again, I’ve learned that such assumptions are foolish and dangerous.)

The past few years have been expensive.   We accumulated nearly $20k in credit card debt related to medical bills (including the cost of herbs, supplements, acupuncture, and other specialists) by March of 2014.  Adahlia’s grandparents helped us out, and continue to help us, but we still have nearly $5k re-accumulated in medical debt.  Yet, when you think about the fact that every time we fly out to Portland we spend $1400-1600, and we fly out every 2 months, it’s not that surprising.   The herbal consultation alone costs $900 (the cost includes 2 months of herbs for Adahlia, and one month of herbs for myself — we’ll have to spend another $200 on a refill for myself), plus plane tickets for the two of us ($400), plus a rental car, and a hotel room.  (We’ve tried to stay with friends but it really doesn’t work very well. This is absolutely no reflection on our friends — who are wonderful — but a reflection of our intensive, ridiculous health regimen.  No matter how gracious our host, we always end up missing doses.  It is much easier for me to be able to set all our medicines out in the open, where their very presence reminds me that we need to take them, where we don’t have the distraction of visitors, and we have a dedicated and quiet place to retreat to, where I can keep tabs on what was taken and what needs taken, and where I can freely employ all of my many techniques for cajoling her into taking her medicine, without having to explain anything to anyone.  Even so, we often miss the mid-day dose — its tricky to take medicine on an airplane or in an airport, or in the backseat of a rental car.)  Considering that the chinese herbs are only part of what we’ve been doing (other supplements include homeopathic spagyrics, fish oils, coq10, vitamin B12, folate, a handful of amino acids, and probiotics, plus there is the cost of the nutrition analysis tests and other tests, and acupuncture supplies), our $5k of credit card medical debt is pretty amazing.  It would be much, much greater if it weren’t, again, for the help we’ve received from grandparents and friends.

So, really, we are lucky.  But as my current card will be maxed out today, when my incredibly generous acupuncture friend will drive to our house and give me an hour of treatment here, using my equipment and needles, for a mere $36, and I will have to start charging my other credit card, I admit that I’m a bit … well, saddened.  This medical adventure has taken an extreme toll on us in every way — including financially.  And I have to brace myself for the reality that its not going to end soon.   Realistically, even if all goes very well, and we can continue to taper off supplements (we’ve already started doing this — we no longer need the homeopathic spagyrics, and I no longer need an herbal extract that my mentor has used to help people in kidney failure stay off dialysis), we will have large medical expenses at least through the end of this year.  Probably longer.

BUT, I can’t think about that now.  Because it doesn’t serve to do anything but stress me out.  Instead, I focus on how far we have come, and how well Adahlia is doing — she is healthier and meeting developmental milestones faster than many “healthy” kids her age, despite her blood disorder.  I focus on the fact that we’ve already accomplished the impossible by increasing my kidney function from 10 to 19 percent.  The fact that my spine no longer hurts.  The assumption that now that my subclinical infection is gone, my immune system will be able to calm down, and stop attacking my spine and kidneys, and my glomeronephritis will stop worsening, and kidney function in both kidneys will improve, and my spine will start to heal and disks begin to regenerate.

The truth is that I actually feel really lucky, really blessed (as corny as it sounds), and really amazed at what we have been through.  At the synchronicity.  At the generosity of those who’ve been touched by our friendship and life together.  At my ability to diagnose when something is wrong, and my reservoir of strength that’s refused to give up, even when I’ve been severely depleted.  I feel wonder and gratitude for this opportunity to trust in myself, my understanding of God and higher good unfolding, and my inner knowing, in ways few have been challenged and privileged to come to trust in their own.

And actually, though I definitely do NOT want to be cut open, I feel good about this surgery.  I don’t feel the dread like I did last year.  The timing is right.  It is not going to be comfortable.  But it is right.  I am ready.

Perhaps I was correct years ago, when I was pregnant with Adahlia and experiencing the kidney and spine pain, but thought:  “This pregnancy is going to move me through something.  This experience is going to heal me.”

Three years, much toil, tremendous pain, many thousands of dollars, incredible heartache, and unfathomable love later, I feel a strong sense of purpose and peace.

No matter what happens, it is right.  It is okay.  This is a complicated place, but the principles are simple.

When you’ve come this far, you can’t go back.

You’ve got to go for it.

You’ve got to trust in it.

And we are.