Confessions and gratitude *freakflag flying alert*

Hello you interconnected web of loveliness!  I just want to share something really special with you.   You know how you have something happen in your life and put out the universal call of help and then suddenly this person you haven’t spoken to in 4 years shows up with a door to a whole new world?  Well that happened to me with my friend Alison. (Standing right there with my parents who beat us to the hospital by 4 hours…equally amazing :)).

Alison held the door open to a whole world of healing energy work and enlightenment that I couldn’t have accepted as completely as I could in this wide open searching state.  Then this village we live in opened their hearts and rounded up a bunch of monetary flow that allowed us to all stay together throughout this crazy ride.  Flow.  So the flow keeps going to Starbucks but that’s a different story.  That’s more about staying awake 20 hours a day for the last 5 days to get to a point where I don’t want to hide the magical side of this journey from you.  Shield’s down, I’m transporting you aboard for a confession of spirit. 

I’m wary of sharing this sort of stuff because well, some of us aren’t ready for these conversations.  They might seem a little wack but when you are in these situations, wack stuff happens.  Magic happens and our capacity to accept it as real exponentially increases.  Or logarithmically – you math heads can correct me.

So there is a wolf hide under my bed in here and I can “see” it when it’s actively pacing the room, it lies in front of the door.  Strangely enough, not too many people are coming in.  Exactly as we need it right now.  This wolf hide is part of Tom, our healer from here who works with First Nations spirituality and has taught me to “see” differently and more completely.  This beautiful wolf hide came as a donation from a wonderful person up north in that little village we love and was intended as a gift to Tom. When he opened it, that was clearly true.  It is a very very powerful gift.  Thank you.  And thank you Tom for letting the wolf keep the threshold clear of …whatever it is that’s not supposed to come in.

The other day, about a week ago, I had a dream about medicine wheels and making one – a HUGE one for Ruby.  Now this comes on the heels of working with Laura to ask my ancestors for guidance and support. This means to accept all of my ancestors as supportive energy and not to reject any part of it.  I have been actively working on that on all sides of my family line and for some reason the side that connects the clearest is probably the thinnest side of my family tree.  It occurred to me when I woke up from that dream that we work with the spirits, energy and strength of place more than anything.  If I was in Scotland, perhaps I’d be calling on Celtic spirits.  Here it’s definitely animal and First Nations spirits who are present.  That’s not to discount the support and guidance I sense from all of our ancestors but it’s the one that seems to root me the most.  So I’ll go with it.  Thank you Laura and thank you Wendy for keeping me from over analyzing this and just hearing/seeing/feeling my way through.

Anyway, back to the medicine wheel.  That’s the background.  So I found this website after much searching that just resonated with me.  It gave me such a vibrational buzz.  Here:  http://www.shannonthunderbird.com/medicine_wheel_teachings.htm.  I was reading through it that night and tried to work out something personal to support Ruby.  I thought maybe just thanking the owner of the site and letting her know our situation, my dream and ask for any pointers would be a good idea.  So I did.  Well the funny thing is, it turns out she’s not too far from here.  She emailed me back right away with not only pointers but a plan and very clear instructions as well as info on medicine bags which I hadn’t even considered.  Some of the advice was also for me.  She was loving and kind and so helpful.  I’ll get on the plan when we get out of here, can’t have willow in the room – they’ll make me take it down due to the “fungus” fear in here.  I will draw it out with animals and hang that up while we are in here. But that’s not the best part.  Typical me, I thought I HAD emailed her a thank you but every day seems like the same day in here and I forgot.  I emailed her a heartfelt thanks and an update last night.  Shannon emailed me right back with news of a song that came to her for Ruby.  Just like that.  Last night.  Thank you Shannon Thunderbird. You are surprising and wonderful.

Wow.  Life is just simply so amazingly flowy and precious.  No matter what happens, I finally feel like I’m not longer a bit nutty, that there is room for my nuttiness in this world and that to connect with what works is all that is important here.  I feel like a new person, a better person, at the very least a better mom for Ruby. 

So enough about me, the Ruby update at present is BP holding but low, another platelet transfusion, probably bloods tomorrow, she’s weakened and tired and not eating due to mouth sores.  I’ve tried almost any food you can imagine but her fear is bigger than her hunger right now so I’m not winning the battle today.  I just keep juicing her line every hour or hour and a half.  I’ll have to do so all night again tonight because of the platelet transfusion.  Don’t want to confuse anyone if she reacts to it again by compounding the mystery with a feed in her nasal tube at the same time.  So this means I lose 2 hours of feeding.  *sigh*.  I try not to freak out about it now.  I just trust that I will have little naps all night and have these crazy dreams like last night where I was again trying to find an apartment in my old eastern city and kept ending up with 1 1/2’s instead of a 4 1/2.  Couldn’t fit everyone in.  Especially when I was expected to park my car in there too.  Thanks to Brian’s picking me up a wonderful camp cot, I’m super cosy at night and instead of trying to find a spot to sleep on exposed and uneven springs, I have a wonderful nest.  I guess that’s my thanks for the day.  I even scored a hug from Amber today!  She’s another mom in here I truly dig.  It’s nice to find a kindred spirit in these hollow halls.

Still here. As in, not “outta here”. Yet.

so, lalala sitting on my cot in the hospital, looking out at the 4 feet of sky above the steel wall across from us out the window.  It’s a cloudy day but bright.  The dogeweather.com says it’s “much terrible, such frosty” but I don’t find it too bad.

Ruby’s been snoozing since about 11pm.  We had another My Little Pony marathon and snuggled up for a bit after she had some atavin to calm her down after the encephalon went into her leg.  It was incredibly traumatic.  Again.  So once a week we have to replace this little injection port in her thigh (just below the skin about an inch long) so that I can inject her with GCSF to boost white blood cell production.  In case I haven’t described this already.   The injections are going wonderfully now…she hardly gets scared, we talk about not letting the pigeon drive the bus and she connects with her fear and the fear of pain and we send it up to the universe to change back into love.  The port though..wow, that’s another matter entirely.  For Ruby, this port change is everything that this place is to her.  It’s terror incarnate.  These are her words:  she’s trapped forever here like this with no hope of ever seeing home again.  She’s trapped without her dog and her cat and her brother and her dad and her bed and the chickens (whooops, we’ll need to replace those before we get back) and the quail (well, these are easy to find).   She says she’s so so so very tired of hurting.  So tired of BEING hurt.  Deliberately by other people.  Even though she gets the whole means-to-an-end….she’s is expressing what we as grownups feel when trapped in the medical system too.  She’s just clearer at shouting it out loud and screaming her rage at the entire situation.

She is being hurt.  She is being trapped.  There is no denying that.  So there is simply acceptance and love and comfort and My Little Pony.  Today though there is sleep.  Gentle doucement do-do.  The wolf prowls the room and lays across the door, protecting us from any interruptions.

You know, for what it’s worth, this experiences has widened my heart,  shown me magic, given me a chance to completely devote myself to my child and practice compassion and advocacy.  Much learned, much to learn.

The “let’s get outta here” club

Sitting on the needle wasn’t part of the plan today.
My bed is full of fabric and bendy, pokey pipe cleaners.  Ruby’s obsession.   The pipecleaners that is.  I’m busy sewing clothes for dolls but boy…this isn’t 1800 and my sewing skills are rusty.  Fortunately so far I haven’t completely blown anything.  Though I did have to hide one skirt that didn’t make the cut so to speak.

Note on the door: No visitors….counts at zero has been respected today.  Though I have to say that I could really use a Holling hug…one that ends with me choking for air while he licks me.  It’s been a long long day and man oh man, still going on the 1.5 hour schedule though I did have a short nap from 3-6.  I’m burning through my ebook collection of Xanth novels.  Nothing too challenging for this little brain.

Right…so just so you know, the other joy of being in here is that this hospital is under construction all the time.  Right now though I’m thinking downstairs someone just turned on the faulty fan again that vibrates through the floor and makes me feel like I’m back on that boat in the middle of the night on the Bass Strait….waaaay below in the cheap bunks.  Buuuuzzzz…hummm..buzzzz..bang….buzzz…this went on till 1am yesterday and the day before that and the….

Ruby’s having a snooze right now after a Wild Kratt’s marathon…crazy for Kratt Brothers she is.  We have this collection of the DVD’s and I swear she’s memorizing all the lines.  Just like she does with My Little Pony and Littlest Pet shop.  Well at least with this one she’s learning some animal facts and not just PinkyPie strategies for good times.  Though I have to admit, PinkyPie really has it going on.

We’re working our way through some Judy Moody  – which we find funny as one of our ancestor’s names was Moody  – saving our last Ivy and Bean for the next book.  We burn through them pretty fast.  When we are in here, I do the reading and when we are out of here, Ruby holes up for hours at night reading to herself.  With all her friends and stuffies, there’s hardly any room in her bed for me but I insist so we can snuggle up and read as late as she likes.

Yesterday we made a pact.  We are both part of the “let’s get outta here” club.  It’s the thing we remind ourselves with when injecting the GCSF at night in her thigh…reallllly realllllly slowly while she takes deep breaths and connects to the “love fountain”.  It’s also the thing we say when I have to do the feeding tube and she moans at me to stop it in the middle of the night.  I tell her we are just part of the club man and we will do what it takes to get outta here.

PS: I have to say, the reiki thing is really really working for me.  I don’t know if it’s simply sleep deprivation or what but I try to do the qigong and reiki on Ruby and me at least once a day and wowza…seriously…I’m a little loopy but I’m not insane or tired or grumpy …although I did growl at a waterbottle that fell three times.  In a row.  Off of a table.  A perfectly flat table.  Grrrrrrr.

Every 1.5 hours, another 35 mls

Hi everyone. Sorry for the delay.  Been crossing swords a bit at the door with folks again.  I know.  Ya.  But I’m not a yes man when I see a situation that is illogical and founded in the craycray. 

So yesterday I was taken to task for Ruby’s weight loss.  Well, she wasn’t tolerating any feeds without 2 antinausea drugs.  So we went as slow as they would have with a bag feed anyway.  Same rate, better food.   The next step is to increase that.  Well found out this morning that 50 is way too much so back to 35, safe zone.  Every 1.5 hours.  All night, all day.  So this is the hard few days for me.  I should be completely incoherent by 4 am tomorrow.  Maybe I’ll have a nap then.

So, the funny thing was when I was taken to task for this (which by the way was the result of our “family meeting” with the 8 docs and Brian and I – very friendly) she was concerned about not having a backup plan.  What I SHOULD have said was “uh, this IS the backup plan.  Your plan was not well tolerated, therefore we decided on this one.  Therefore….we ARE on the backup plan.”.  She figured premeding Ruby with a bunch of benedyrl and pushing this feed she is allergic to is a great way to feed her.  I laughed and laughed and said uh, no.  No thanks.  It’s part of our care plan.  I’m not sure why if we already had this big meeting to determine that she doesn’t tolerate the feeds they give and there’s nothing else they can give due to her allergies……and also to give her washed platelets (which is btw the battle this hour)….why would I need to recover ground we already covered.  And why in such a confrontational defeating, non teamlike way.  I mean, aren’t we on the same side?  Ruby’s side?  Aren’t we supporting each other?  That would be nice.  Every time I have to defend decisions already made I truly feel retraumatized and instantly needing to defend this doorway. So now I need to reexplain again.  And again.  She needs washed platelets.  The end.  I pointed them back to themselves and said, your process is not something I can fix or even comprehend.  All I know is we’ve established some treatment needs, written them down,  had numerous meetings and come to understand Ruby responds differently than the median patient.  So ya.  It’s like being hauled into the office to explain something, everyone coming to an understanding that appears to be supportive and more like a cohesive approach, then to have it written down and made into a sort of “policy” and then….when I’m following this plan and supporting these decisions, suddenly it’s as if it’s completely forgotten and reset back to default.  You know, like when you pull your battery in your computer and bango, it’s back to defaults.  *sigh*.  It’s a battle followed by a conversation followed by a battle followed by me standing at the door and asking when we can be released.

 

Sunny day

She’s better today.  BP stabilized last night.  Still have another bumpy chemo ride today.  This is the batch that damages her hearing so focusing protection on that part of her body.  Preserve the internal ear canals and delicate hairs there.  So if you can spare some energy to just send that intentional healing and protection, it’s appreciated.  Should begin about 3PM PST.  

Tom came last night and guided healing to Ruby and some major shifts happened.  Ruby had a good night (despite the 2 hour pee schedule) and we are watching us some Bernstain Bears right now.  She LOVES them. 

Ruby’s thinking about Charlie (our dog) alot lately.  We found a dog down in the gift store that reminds her so much of him I couldn’t deny her. It’s a Collie but it looks a bit like our beardog/air-dale hairy/corgie/weston terrier mystery dog Charlie.  He’s such a cuddle bug.  Maybe he’s taller now, let me know -> Dianna 🙂

So we carry on, carry on.  When I face these sorts of things, I find I have a choice.  To go down the rabbit hole into deep disconnected darkness or I can chose to shine a bright light on those fears and terrors and feelings and just tell them they are seen.  Boy this is WAY more effective.  And informative. 

Now if I could only learn to crochet. 

Whew so far so good

Ok so they started earlier today to ensure that circadian rhythms didn’t play into this at all.  Plus that and fewer other drugs.  So 86/43 20 minutes in.  Running the treatment over 2 hours instead of one (like the last round, like I asked for before but I don’t think they did) and here we are rolling along a wee bit better.  She’s sleeping now.  Probably worn out by her playdate with Ali.  I’m sewing some fairy clothes in the shadowy light of rain.

So righteo, along we roll.

Only….let’s see here…..21-5….16 days to go before projected rise in wbc and lift out of neutropenic state.  This will put us back in Richmond in about 2 weeks bugging the other Grandpa Ken.

Much love, thanks for listening to my rant from before.  I could remove it but that would be like shaving my armpits.   Really unnecessary.

sidenote: riiight…so just as I post this, it turns out that her bp just dropped to 84/38 and the alarm went off and her pulse is 94.  So….back to concerning, back to every 15 minutes but at least it’s daylight and less freaky.

update 6pm: 71/38

Sometimes I feel like a nut

Poooor nurses.  That’s all I can say.  That and poooor doctors dealing with me.  I am always questioning, reading, inquiring, well….stonewalling and then sometimes at 3 am without sleep and without basis, saying things like “uh….I have to say no to cephalexin” and then not remember why.  They gave her something different which is stronger but she’s not reacting to it so that’s a good thing.  I waited till 4 am to see if she rashed out or something. 

Her fever (ya I know…I said she didn’t have one) spiked up to 38.1 and then it came down a few hours later.  Just like it always does.  And they respond just like they always do.  Tylenol and antibiotics.  I know they can’t take chances but I feel so strongly that this is just Ruby’s pattern and always seems to be the same.  Give chemo drug, wait 2 days, fever spikes, wait 5 hours, fever gone.  Rinse and repeat.  But a protocol is a protocol.  Right?  And they don’t deviate from that on the just in case.  I know I should feel grateful but I’m more of the wait and see variety of mom than the quick medicine bottle grabber.  I remember when antibiotics went out of vogue, the quick response treatment has created a plethora of your most divinely ninja bacteria jumping from one nostril to another around the globe.  So when I hope for a holdback of resistance creating antibiotics I do feel a small sense of “just wait it out for a few hours.”

Ruby’s counts are in the can so to speak.  She is officially neutropenic.  This is a fancy word (hellllllo Nancy) for having no functioning white blood cells and no ability to fight infection.  This is a fancy prereq for isolation.  Good thing I brought the bari ukulele.  I can torment her back to health for the next 3 weeks instead of the usual 1.  This also means if you have some plan to visit you’ll be masking up.

Tom came by last night.  His visits are always so fascinating for me.  It’s more like a teacher to student experience for me.  Oh ya, because this is all about me.  Just jokin.  I have my perspective.  I am learning a ton from him though.  At about 4 am (he was here in the early evening for a bit) I thought of a white crane – the kind with the red mark on his face – standing near the bed and guarding it.  Then I knew I could go to sleep.

Ruby is so sweet.  Even if she’s shaking like a leaf and feeling like the worst sort of special hell, she still turns to me so politely and says “mama, I know you want to make sure I’m cleaned up but I really really just need to go to bed” and then she walks back to bed herself.  Shaking and barely able to stand.  I love this hilarious sprite.

It’s only day 3 and already she’s sooooo sick of me saying the moment she wakes up “do you need to go pee?” 

So today is the echocardiogram.  Her blood pressure is stable and heart rate is sitting in that sweet spot of normal.  This will hopefully give us a normal and healthy heart reading.  The sooner we are done this course of treatment, the sooner we can leave the hospital and the sooner I can get her drinking carrot juice.  Ha!  ok, that was a wishful thought.  I have a feeling she will have an NG tube by the end of the day.  Can I just say again how amazing those Blendtec folks are?  They sent us a blender we can use to liquify most anything.  It’s the best one they had and they sent it to us for FREE.  Yup.  You heard right.  Free.  Blows me away.  Now I can just get Brian to roast a chunk of moose and make Ruby’s favorite mashed potatoes and beans along with some carrots and maybe a healthy dose of kale and whoosh, it’s line feed.  Blendtec, you have a special hug from me today.  The whole company.  Fortunately a cyber hug is customizable in size. 

 

Well, it’s good and then it’s just what it is.

So we are in hospital and embarking on the third round of chemo.  Remember all those drugs…ya  same same.  Problem this time is she is crashing waaaaaay sooner than she did before and in a strange way.  No fever but complete malaise.  She’s sleeping all day today off and on and doesn’t want to eat.  Sharp contrast from the turkey, cantaloupe, blueberry and half a box of spring salad mix festivus for the restofus that was yesterday.  Her counts are way down already and her blood pressure is really low.  Heart rate is within low normal.  

Plan now is echocardiogram tomorrow as well as some other tests.  They’ve vampired her out of blood this afternoon to check for hormonal imbalances caused by the tumor removal (pituitary, pineal).  You know as I watch them draw vial after vial I wonder to myself that as they go down the slow recovery path, it’s a small wonder we get to 4 blood transfusions and 4 or 5 platelet transfusions by the time we end a round. 

Seems everyone is on board with erring on the side of caution this time.  I suppose the family meeting which was Brian and myself along with about 8 other professionals during that last round of allergic reactions and complications is putting the right perspective on this.  I’m grateful the docs are accommodating my mama radar and are investigating things early.  Well.  Earlyish.  If it was down to me, everyone in here would be monitored waaaaay closer on early effects from such intensive chemo.  But.  In this imperfect world, that would probably bankrupt the system.  Also I wouldn’t determine max dosage by survivability of said dosage.  I would evaluate it differently.  Ah but then I’m not a doctor and really, my education is playing with computers and sound. 

Holling and I took a walk from here up to the Bloedel Conservatory.  I LOVE that place and the walk through the huge dark cedars.  We strolled alongside about 20 geese and they just honked and watched us.  He didn’t want to chase them and kept shushing me when I was talking too loud.  Then he saw some squirrels and well…those are for chasing.   We walked for about 6 hours straight.  The little man can GO!  Unfortunately the talking parrot didn’t talk back to him this time in the conservatory.  We did meet another one but Holling said it was too big and it “could probably eat him” so he was less inclined to have a chat. 

We stopped in for a crepe and an icecream and then the looong walk back.  He made it though.  I can hear him,  not sure why he’s back so soon…oh right it’s 6pm and he wore out the volunteer in a record 20 minutes :).  As soon as he sees one he immediately grabs them for a jaunt up to the playroom on 3. 

Ruby’s room is all decorated up already, fairy tree hanging from the ceiling, my deep blue silk sari with sparkles adorns the blind thingy – what are those called again along the top?  and the deep orangy red one with sparkly gold and red embroidery is on the bed.  She sleeps with the healing blanket Rosemary’s sister wove (sorry, blanking on your name Rosemary’s sister) and surrounded by her snowy owl, her baby owl, Foxy the fox and the supergrrrl Groovy girl. 

Holling is fixing his “Auntie Precious” kitty with bandaids and injections as I type this and Brian hopefully is making his way to the top of the Bloedel hill to have a good look around and sit in the deep cedars. 

Much love, more maybe tomorrow.

(Ya I know, my original sparkly writing is lacking.  That’s what happens when you don’t sleep.)

Little Skipper Ruby

Hi Everyone, 

We had the fabulous experience (or rather Ruby and I did) of a conscious MRI scan of her brain.  At first, it was wayyyy too daunting but a little education, a little play and some comparisons to the roller coasters at West Ed and she was game.  

Here’s a quick explanation.  I will have to draw the faces one of these days but for now: a mild smile is the reaaallllly slow baby roller coaster at West Ed.  The smile but not a wild grin is the slightly bigger roller coaster..the one with the dragon in the front – that’s where she got over her fear of them riding right in the front by herself.  We then walked a little way down to the roller coaster before the big big one that she couldn’t ride because she was only 6.  On this one she had to go with a parent so Brian took her and the pic we have of her is the one that we call Level 3 Roller Coaster.  It’s the “big grin, clap both hands, jump up and down, and shout hurray”  which is Ruby’s description of the happiest happy humanly possible.  

All the techs and the radio doc worked hard to get her in the first go and we went back to the change room with Ruby shaking and crying and saying “please put me to sleeeeeeeeep, I’m too terrified!!!”  The fantastic Claire from Child Life (the parent lifesaver line in the hospital – they make the hard stuff easier through play) and her mate Emily came down with an Ipad with the sounds and a binder of pics and stories.  After about an hour of talking and listening, Ruby felt ready.  We went out to the waiting room and chatted some more.  Wouldn’t you know it.  My Little Pony was playing on TV.  This might have been what turned her into Rainbow Dash.  

Finally we were ready.  The techs assumed Ruby was going to have a spaceship experience but she corrected them pretty quickly.  “This is a submarine and we are going deep in the sea to hear the deep sea echolocation.”  So they called her skipper and captain instead.  “Mission control” checked in through the exam but she held so so very still we were done ahead of schedule and she was….disappointed!  What?  I know.  Crazy huh?  They asked her how it went and she shouted (had the headphones on) “I want to do this forever!!  This was SOOOOO 3rd Roller coaster AWESOME!!!”  Fortunately for Ruby this will be forever 🙂  She will need these scans every three months for the next 5-10 years and then once a year till the end of her long long life.  She said “I will even love this when I am as old as Grandma!”.  Way to look ahead Ruby!

I’m sitting here in Ken’s living room marveling at how easily he took us in and keeps accepting the 100 newspapers on the floor of Holling’s bridge.  How he tiptoes around the scattered Lego and how he puts up with the extra strong second pot of coffee.  What a trooper.  We love this guy.  

So here’s the scoop.  

The MRI was clear of disease to the best of their initial reading.  This means we will go in for one more round of chemo.  Ruby said she is totally ok with that.  We were due to go in on Friday but we got a reprieve when there were no beds.  So we are going in on Monday morning.  We start with the boring 6 hour hydration for methyltrexate and then we move on to the Vincristine, Etoposide, Cisplatin, and Cyclophosphamide.  So the big non sleeping run for the first 5 days then it’s the crash for the rest.  We are awaiting our recert Blendtec from the company who makes them.  They are SO awesome and will allow me to just make meals, blend them and then get them in Ruby.  I will keep juicing as well when I’m in there – I don’t get sick when I’m doing that on a regular basis.  We are so grateful for Blendtec’s family medical program.  They are sending this gratis and we will be able to support our little sweet bug though this round.  

So that’s our path for now.  We are at this point.  We are taking this path.  We are not alone, we are so loved and supported by all of you and the healers that heal our spirits and teach us ways through this deep dark wood.  Thank you.  Again, these two words have such power.  Thank you.  And yet when I am the one saying them, it somehow feels that I can’t say them loud enough or strongly enough to make as much of an impact back to you.  Much love, namaste, all of those good goojoos to you.