3rd Anniversary – in Photos (2nd try!)

The photos I intended did not make it the first time, so I’m doing this again!

I’m not inspired to write much today, but want to share a beautiful day of remembering, celebrating and loving Elizabeth. My mom, sister, dear friend Victoria (Elizabeth’s godmother) and I gathered with food and drink and created altars and played on the beach.

Here is some of what the day held…

Altar, Elizabeth Blue, anniversary, death

Altar for Elizabeth Blue

Lucia Maya, Elizabeth Blue, Elizabeth Meagher Lucia Maya, Elizabeth Blue, Elizabeth Meagher

Marin Headlands, Elizabeth Blue, Lucia Maya

Marin Headlands

Marin Headlands, Elizabeth Blue, Lucia Maya

Victoria, Marin Headlands

Marin Headlands, Elizabeth Blue, Lucia Maya, altar

Beach Altar

Marin Headlands, Elizabeth Blue, Lucia Maya, altar

Circle of Stones

Marin Headlands, Elizabeth Blue, Lucia Maya,

Tunnel Into the Light

Marin Headlands, Elizabeth Blue, Lucia Maya, altar

home altar

IMG_6546 Marin Headlands, Elizabeth Blue, Lucia Maya, altar Marin Headlands, Elizabeth Blue, Lucia Maya, altar

Marin Headlands, Elizabeth Blue, Lucia Maya, altar

Me, happy at dinner with my family

Marin Headlands, Elizabeth Blue, Lucia Maya, altar

Me and my mom at dinner

Some Days with Elizabeth Blue…

Some Days with Elizabeth

Preface:  I am struggling a bit this week, the week leading to the first year anniversary of my daughter Elizabeth’s death.  Partly for the obvious reasons – the intensity of this loss resounding in my body and mind and spirit to a degree that at times I can’t remember the simplest things, like where an acupuncture office is that I’ve been to a dozen times; I’m thinking of her constantly, with memories of her at all stages of her life popping up, sometimes making me laugh, often in tears…Today I smiled as I put on sunglasses and thought of Elizabeth’s love of sunglasses and how she always accessorized with them in the most artful way, and then I passed the hospital where she had brain surgery, and remembered the neurosurgeon sitting with me in the waiting area, telling me that the surgery was not successful, he could only remove part of the tumor, and that her brain was swelling to such a degree that he had to stop operating. At first I felt sad, and then I heard myself saying out loud “you were released!” and was able to smile and feel joy for/with her…

The less obvious reason I’ve been struggling: I’ve been posting these past year’s emails from Elizabeth’s and my journey and have had this strong sense that they each needed to be shared before the anniversary date of each update. But I’ve fallen behind, and the last few were posted “late” and I have several more to share before we get to the anniversary itself, in less than a week, on September 23.

It feels like the timing has been in large part due to Elizabeth’s guidance – that in the beginning she was urging me on, also aware of the dates and the timing being important, but as her spirit is moving to other levels, the earthly concepts of time are less important, so I haven’t received guidance to post as urgently in the past two months, and I’ve slowed down. Also, as I share these writings I (re)experience the journey, and it feels like there will be another sense of finality in sharing these emails leading to her transition…So this is all to warn you that this may be an intense week for you as well, if you read these in real-time. I’ll be sharing a month’s worth of transformation in a very condensed time, and you can choose to read them as they come, or you may prefer to take your time and stretch it out a bit.  It feels important however, for me to share all the emails by this first anniversary.  I will continue to share Elizabeth’s writing, as well as my own.

Elizabeth Blue, Elizabeth Meagher, lymphoma,

Elizabeth Blue, June, 2012

Though certainly sad on some level, ultimately my hope is that this story is as uplifting and transformative for you as it is for me.  May these offerings bring you some comfort and inspiration on your journey!

This image is how I’m seeing her in my mind’s eye right now…

 

 

 

 

 

September 4, 2012

Dear Ones,
today I woke up, as I often do, to the sound of wooden bracelets lightly clinking together.  Elizabeth’s bed in the living room is visible from our room, and I have a direct line of sight to her, so I can see her begin to move her right arm and hand, as though she is dancing slowly by herself, and making quiet music with her bracelets.  She’s been wearing at least 6 bracelets for weeks, given to her by different people – 2 she was gifted from Tashe, my sister, one was a gift from Ann Marie, our friend and E’s doctor, and the 3 wooden ones are mine, gifted to me from my partner Zelie.  Elizabeth has also been given rings from several women who’ve visited – as she plays with and holds their hands, they’ve been inspired/instructed to leave a ring with her.  She enjoys playing with them and looking at them all.

I’ve been reading out loud to Elizabeth (one of my favorite things when my daughters were young, and still), and the first book that came to me was The Little Prince. I hadn’t remembered the story, but it was an amazingly perfect book to read at this time, for me very sweet and very reassuring, about love and the process of leaving one’s body. I highly recommend it for all.  I’ve also been reading her Winnie the Pooh, which is lovely.  We’ve been listening for weeks to the Graceful Passages CD, which she always says yes to when I ask, and also still loving the Coleman Barks readings of Rumi poetry.  We have lots of beautiful relaxation types of music, which Elizabeth enjoys too.  She likes being read to, and music, but then also wants time for quiet, when she’ll say no to offerings of words or music.

We’ve been enjoying this time of more quiet, more spaciousness, and Elizabeth seems to want to have time alone each day. (It is just me and Zelie here, with Elizabeth’s father Greg coming on the weekends from San Francisco.) It is a bit hard to know her preferences, as she might answer 2 different ways to the same question, depending on how it’s asked, so mostly I’m following my intuition and staying in the flow, reading her as best as I can, and trying to take care of myself too. It’s hard to tell also how much she understands, she has confusion and has little short-term memory, though long-term seems much better. Her expression is almost always neutral, and she only answers yes or no when asked, and if pressed might give a word or two explanation. She is  still not stating anything on her own, or asking any questions, which is SO different from her previous expressive self, since she could first speak!  She continues to smile so sweetly when we smile at her, and only occasionally expresses pain, her neck sometimes hurts when we turn her, but as soon as she’s positioned well, she’s not in pain.

This morning I was talking to Elizabeth about how hard it’s been for me to believe that she’s dying (throughout this process with cancer, and still, though I’m finally starting to believe it), and she said the same is true for her.  (I was talking about a poem of hers I read, that startled me as it seemed to be speaking of dying, but then I realized it was written as she was preparing to leave Tucson for Seattle 2 years ago – it’s “Bird’s Nest”, here.) I asked if she felt ready, and she said no.  I asked if she felt she needed to do or say anything to prepare, and she said no.  So I said perhaps she’s not ready yet because today’s not the day, and that she would be ready when it is the day, and she responded with holding up crossed fingers, which was both funny and so dear and moving.  It does feel that she is getting closer to the end, though it’s still really hard to see how or when that will happen.  I’m doing my best to be present and live each day as though it could be her last, and my own as well.

Physically, she is having 3-4 episodes of tremors/increased heart rate each day (due to the tumor in her brain), and sometimes they bother her, sometimes not, mainly related to the severity. This morning was the most intense one – they’re similar to the full body shivering one might have when really cold, and include her torso and her right arm.  The medication helps quickly most often, though it makes her sleepy or “numb” she says, so she prefers not to have it when possible.  Her head continues to swell, and the tumor in her neck feels like it’s growing, especially as it causes some pain with movement.  I think it moves the vertebrae out of place, and some healer-friends have been able to help it shift back several times, giving her relief for many days or weeks.

She has been eating well still, and drinking some.  The other day, she was holding a rose, and suddenly I realized she’d taken a bite!  Must have smelled really good…though she said it didn’t taste good.

Elizabeth still says she is not afraid, her mind is quiet, and she’s peaceful.  I’m really grateful for that, and for each day.  Sometimes I go into stories of past or future, and get overwhelmed with grief, but then I can simply move into gratitude for her presence right now, feel the warmth of her skin, look into her eyes, place my hand on her heart and feel that love, and all is well.

love and blessings,
Lucia

Elizabeth Blue, Elizabeth Meagher, hospice

Elizabeth liked ice packs on her head – here she was being funny in this subtle way of hers…

Elizabeth Blue, Elizabeth Meagher, Zelie Duvauchelle, hospice

Zelie and Elizabeth, September 4, 2012

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

September 11, 2012

Dear Ones,

There has  been a noticeable shift this past week, as Elizabeth has stopped eating and drinking for the most part. She occasionally (every 2-4 days) has said yes to something – Greg brought her favorite dessert of carrot cake this weekend, and she had a few bites, and our friend Tita brought some wonderful beans and rice (another favorite) which she ate as well, but overall she’s stopped eating and drinking.  We are not pushing her to eat or drink, simply continuing to offer, as we’ve been told that often the wisdom of the body is to stop, and that it’s a painless and easy way to leave.

For quite a while she’s needed some encouragement to eat – she might say no to being hungry, but then would say yes to a specific food…But something really shifted last Wednesday – she started only drinking enough to swallow her pills and then saying no when I asked if she wants more.  And started saying no to everything i offered her to eat.    Right after I wrote this, she said yes to food, and ate a peach…so it continues to change, but that was the only thing she’s eaten since a dinner on Saturday. There is this fine line between offering and encouraging or urging. I want her to live as long as possible, but don’t to prolong her life if it means suffering. It feels like the best I can do is listen to her, and when she’s not clear, then follow my intuition, knowing her as well as I do for these 22 years. I hear from others some concern about her not eating and drinking, and it certainly has felt strange as a mother, not to urge her to eat, but I continue to trust her and listen.

This has brought the reality of her leaving that much closer, and I am aware of how precious it is that I can massage her arms and feet, clean her skin, hear her voice (more rarely now), kiss her cheek… I am deeply grateful for the blessing of each day with Elizabeth still here in her body, and at the same time wanting to let her go, which is the most challenging contrast of intentions and emotions I’ve ever experienced.  The grief is ever-present, and mostly just below the surface, as I stay with her in this journey, present as I possibly can be.

I’ve just finished reading “The Alchemist” by Paulo Coelho to Elizabeth, which I loved, and she seemed to enjoy, usually saying yes when I would ask if she wanted me to continue.  It doesn’t seem she is following the story, but seems to like the sound of my voice. I’ve now started reading pieces from Anne Lamott’s “Tender Mercies”, and though I’d read it years ago, am amazed at how perfect each book has been for the process Elizabeth is in, and perhaps more so for me!  She is not wanting music lately, prefers me to be with her, even if we’re not talking, though she still wants some time alone.

I keep delaying sending this, as things change each day, but I know many of you are wanting to know what life is like here, so this feels somehow like a lot is missing, but it’s still enough.

much love,
Lucia

Keep Living

A Reason to Keep Living

This is a piece Elizabeth Blue wrote, from the period when she was going through chemo for the first time. She was being treated for non-hodgkins lymphoma which was diagnosed 2 months earlier.  The doctors had told us she had an 85-90% chance of full recovery at this point.

Elizabeth Blue, Jade Beall, Elizabeth Meagher

Elizabeth Blue, April, 2012  (photo by Jade Beall)

1.20.12

Keep Living

It’s sort of funny this thing when you have cancer.  One thing about it is when people are talking about someone who they know who has died recently, usually part of such a story is telling of how they died or what they died from.  The funny thing is when you have cancer and someone is telling a story about someone they knew who died from cancer, they chose to omit that detail.  And that’s how you can tell.  You don’t really want to ask about it (it’s a normal question, ‘how did they die?’) because you can tell and you don’t want to make the person telling the story uncomfortable.  You don’t want to make them be the one to say cancer kills to your face.

The funny thing is that when you have cancer, if you’ve had it for any length of time you had to come to grips with dying long ago.  You’re sort of over it now (that is if you’ve established that you’re probably not going to die).  You’ve dealt with that possibility and, in a sense, moved on.  You kinda have to move on.  You kinda have to move on from that idea of death if you have any intention or expectation of living.  I think of a friend who has cancer (an uncurable kind she will live and die with, but probably has a long time to live).  She told me that at first when diagnosed she was very depressed.  For about a month all she could do was be sad.  And then a friend said to her: “Tita, you can’t die while you’re still living.”  And now she sees beauty in everything because it’s what makes her so so happy and want to keep living.  I think that’s the thing, you know, you’ve got to find that thing that makes you want to keep living.  For Tita it’s beauty.  

My Godmother recently asked me what my thing was, that thing that I want to live life for.  At my age there are a lot of obvious potentials to want to fulfill.  (Having children, a husband, a career, etc.) but these aren’t palpable things you get to experience right away if you beat cancer.  They’re a bit far off in the future to put that desire in your hands, a desire strong enough to make you want to live as much or more than you’ve ever wanted anything before.  

What came to mind for me was the carnal.  Wanting to live long enough to have that amazing feeling of heartbreakingly beautiful sex with a person after you’ve wanted and been imagining it for months.

That’s enough for a twenty-something person to want to keep living another day, truly beautiful sex.  It doesn’t even have to be actual sex, it could be just the idea of it.  The idea of the hunt or the chase and the exuberant feeling of wanting someone and guessing that they might want you too.  Some days that is quite enough to keep me alive.

Elizabeth Blue ©

Hospice – last week of August, 2012

Slipping Closer to the Edge…

These writings are from about a month before my daughter Elizabeth Blue died.  She was at home and needing 24 hour care, having had a stroke following unsuccessful surgery and chemo to remove the cancer that had spread to her brain. She was in a peaceful state of grace that is hard to capture in words and images.

August 24, 2012: a group email

dear ones,

again, I’m not sure how long it’s been since writing, but when I start to receive texts and emails asking what is going on, I can feel it’s time to share more outside of this small and yet expansive, world I’m living in.

Day to day, it’s hard to see change, much like when you have a newborn baby, and can’t see how quickly she is changing because you’re so immersed. But when I look at photos of Elizabeth now, I can see that her head is more swollen, and I know she now has a bump on the back of her neck that is very likely another tumor, or one that has spread, so there is evidence that the cancer is growing.   She has also had several episodes of muscle tremors, with her heart racing, which is uncomfortable for her, but responds to muscle-relaxants. It is likely a sign of neurological symptoms from the tumor, and may indicate other symptoms to come.

Some days she seems even less able to track things in a linear way, but this seems so natural now it’s hard to notice the change.  Today also for the first time she said her mind was busy when I asked (rather than quiet), using her hands to show me “chatty”.   She often uses her hands to communicate, though she is able to speak. She has said she is “doing work”, working through some things internally on this journey that need to be completed.  She is aware of the support she has, from all of us, in addition to the unseen forces.

There have been many visitors, (including the nurse and nurse’s aide 2 times a week), which she seems to enjoy though gets tired quickly. She says yes to everyone who has asked to visit, though I limit the schedule so she (and I) aren’t too tired. Often I am happiest when I have time alone to just sit with Elizabeth, like the other morning when I played Coleman Barks’ album, his readings of Rumi poetry, and we listened together, which was a beautiful way to start our day.  The physical tasks of feeding, changing, turning her, giving medicines at the right time, etc, often take up most of the time in the day, but I try to find times still when we can simply sit and be…

We have fewer people here, which is easier in some ways, harder in others.  Tashe and Terri (my sister and sister-in-law) were here which was immensely helpful. My mom is leaving this weekend, and it’s been wonderful to have her. She’s been patient and generous with me, even when I’m not at my best, not as patient and loving as I’d like to be.  Julianna (my younger daughter, 19 years old) heads back to NYU on Tuesday, and I’m going to miss her terribly.  She’s been home all summer, the longest time we’ve had together in many years and I’ve enjoyed every day with her.  During this difficult time she’s been just amazing – so loving, supportive, thoughtful, helpful, generous and just beautiful to be with. She is ready to go back to school, and though I can’t imagine how I could function in that world now, I can see that it will be a good place for her right now.

So next week it will be just Zelie (my partner), Elizabeth and me here, and we’ll see how that goes. Zelie is wonderful – patient and loving, and really sweet to see the two of them together. Greg (Elizabeth’s father) continues to come every week from Friday to Sunday, and brings Elizabeth treats from Berkeley and good company as he sits with her for hours each day, and he just cooked us all a wonderful dinner.  We may call on friends and hospice volunteers more, taking up offers of meals and perhaps just to come and sit with Elizabeth so we can do errands or have some time for emails and maybe even some breaks…

It doesn’t feel like Elizabeth’s ready to leave us yet, and yet we are aware it could happen at any time.  Most days it simply feels like I’m caring for her while she’s very ill, disabled, but really hard to see/believe that she’s dying.  The hardest day for me so far was going to Elizabeth’s apartment for the first time without her, and seeing all her belongings: her artwork, clothes, lists of things to do, all the outward ordinary objects that connect me to her in her previous self, all the ways we spent time together, the gifts I bought her, the stories of getting these shoes in Seattle, or that friend who made her that drawing, etc…it was just heartbreaking. Then a couple of days later I went back, and already it had shifted, and was much easier…so time continues to help, and continuing to be present to whatever degree possible.

I’ve been in the process of writing this in bits for days, as that’s how life is right now, and this feels broken up and unsatisfying, as some of the days do.  There’s an unsettled quality right now, and also an immense amount of love and gratitude in each day. Grateful for all that has been and all that is.

love and gratitude to you all,

Lucia

We managed to take Elizabeth outside in a reclining wheelchair to the backyard last week, which she’d really wanted to do:

Elizabeth Blue. hospice,

Elizabeth Blue on her expedition outside, 8/2012

Elizabeth Blue, hospice, wheelchair,

Elizabeth with Julianna and Greg, 8/2012

Elizabeth Blue, hospice, reclining wheelchair,

Elizabeth with Grandma, 8/2012

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

August 28, 2012 – from Lucia’s Journal

Tonight I had the thought to tell Elizabeth that I would willingly trade places with her, sacrifice my life for hers, and then I realized how arrogant that was, the idea that my life was better then hers, my situation, my potential future, better than hers.  I saw in that instant that her life and situation, however long, has nothing wrong with it, nothing that she needs to “trade” for.  I shared this all with her, and she agreed, nodding.  I finished by saying that I wanted her to know that if I could, and she wanted, I would willingly give my life for hers.

Moving Into Acceptance and Enlightenment

Moving Into Acceptance and Enlightenment

Early August, 2012: Emails and other writings from Lucia Maya

These are emails I wrote from the second week after my 22 year old daughter, Elizabeth Blue, came home from the hospital under hospice care last summer.  She arrived at my house and we quickly settled into a routine of caring for her physically in this new state. Emotionally adjusting to this unexpected new paradigm, appearing to be the end of her life, was a bit more of a challenge. In a very short time,  Elizabeth had moved into the most beautiful state of love, acceptance, peace and grace – true enlightenment, that I have ever witnessed.  This guided the rest of us and we followed her lead…

August 5, 2012: a group email
Hi all,
I’ve not been writing because there’s not much to say – it’s very quiet here. But I can understand you all might want a window in to what the days are like…

Elizabeth is sleeping much of the time, on a bed set up in the living room, with flowers all around, a lovely altar that she can see at the foot of the bed, essential oils diffusing much of the time.  She has been massaged several times a day by my sister Tashe, who left yesterday, and is hugely missed by me and the rest of the family!  Elizabeth doesn’t seem to notice when people come or go, and has no sense of time it appears… I am doing some massage as well, keeping her limbs moving and loving her with touch. Elizabeth is not able to use much of her body, mainly just her right hand, and she can speak and smile, though still mostly a whisper, from having had the breathing tube in so long, but last night she did start to speak a bit louder and it was lovely to hear her voice! When I told her that, she said, “I bet.” Hard to tell when she’s being funny, but it seems she doesn’t get jokes now, or perhaps I’m not getting hers – yesterday i kissed her and said “i want to bite you”, meaning she was so yummy i wanted to eat her up, and she replied, with no expression, “please don’t”.   When I asked her later if she preferred being shifted to her back or her other side, she asked, “what other side?”  It seems she has little sense of the body at this point.  She’s said no every time we’ve asked her if she is having any pain, but this morning said yes, and when i asked her where, and named several possibilities, she couldn’t say where. I gave her some pain meds and she’s been sleeping mostly since then.

She eats usually one small meal each day, declining most food that’s offered throughout the day, and drinking some.   Usually she has some fruit,  and something like a tamale, last night she said yes to a veggie burger with guacamole, but then only ate a couple of bites. It seems she’s eating less each day, but then she surprises us and eats a lot one day.   She’s taking almost no medication, other than continuing on the anti-seizure med, now an antibiotic because she got a UTI, and something to help her sleep at night, though she may not need that still now that she’s off the steroids which were keeping her awake.

Her friend Ava came down from Seattle for a visit this week, and today her oldest friend Brieana is here from California, and she has seemed to enjoy them, mostly listening but talking with them some too.  My dad and my step mother, Alexandra, my brother David, have all been here this week too, and her dad Greg is here again for a long weekend, and plans to continue that schedule for now.  My mom is staying and it’s really wonderful to have her presence and her help. Zelie (my partner who’d been away since Elizabeth’s recurrence of lymphoma, mid-June) came home on Wednesday and it’s been wonderful to have her home.  Victoria (my close friend and Elizabeth’s godmother) arrives tomorrow for most of the week, and that will be wonderful I’m sure too.

Elizabeth has said a couple of times this week that her mind is quiet, and yesterday when I asked what is going on inside, she said “nothing, and a lot”.  She had one night with a lot of anxiety, and she and I talked more about death, fear of the unknown, her fear of disappointing people (especially her grandmother, who she’s been quite close to), and we’ve each been making it as clear as we can how much we love her and will miss her, and that we will be ok when she goes, that we want her to leave whenever she’s ready, and we will be fine with her timing, and that she’s not disappointing us, that we are incredibly proud of her and everything about her.  Then Zelie, Tashe and I all did Reiki on her for quite a while, and she’s seemed more at peace since then.

It’s a very strange and interesting time, as I am deeply sad, and in acceptance, and possibly some denial too, as it feels like the Elizabeth I’ve always known is already gone, and I love this one in front of me as well, but I’m grieving and loving her at the same time…and numb some of the time too, as I seem to run out of emotion after some time.

Thank you all for your continued prayers, love and support.
love,
Lucia

August 8, 2012
Some friends who do energy healing and can “see” into the body as well as angels and guides came to do some work on Elizabeth.  This was my reply about how she was doing after the visit:
She is good, very quiet, more inward, wanting time alone, which is rare for her.  She seems more at peace, and it feels like what transpired yesterday, first felt like a move towards “recovery”, and now feels more like a move towards some resolution, clearing, and bringing all of us gathered into more peace and center…we’ll see what each day brings.
love,  Lucia

Our friend’s experience of working with Elizabeth:
“the energy was incredible! I grounded while there but it was a surprise to see Elizabeth’s guardian angel actually materialize. At that exact time, she smiled really big and seemed to relax…I saw you and Elizabeth connect on a level not often seen, it was so deep.
Elizabeth felt at peace as soon as the guardian angel descended and spread her wings. That’s about the same time M. told her she could change her  mind if she wanted. I think her guardian angel was telling her the same, but there seemed to be a profound energy  change in the room.”
August 9, 2012: to a friend:
Elizabeth’s cat, Blue, can come in and visit her from the guest house where he’s living now with my mom, who loves him.  Interestingly (and very surprisingly), Elizabeth’s not very interested in him and none of the animals are showing interest in her, which is really different than in the past. She’s always been an animal person, more connected with them than with most humans, and they always love her…so clearly there’s been a big shift (in her energy and her identity), partly I think they don’t recognize her, even her own beloved Blue.
August 12, 2012: about a home funeral
We had learned about the possibility of a home funeral: being able to take care of Elizabeth’s body at home, with the guidance and support of a wonderful woman in Tucson, Kristine Bentz of Sweetgrass Ceremonies. She came to listen and share information with our whole family who gathered in circle with her.  It was incredibly helpful to have her support during this time and later. This was Kristine’s email after the meeting:
“I left awash in goosebumps today. Despite the heat. Thank you for being so courageous and sitting in a circle to open the conversation we shared. I do not pretend to know what you feel in your journey with Elizabeth. I can only offer this: I felt love overflowing your home and her being. She is surrounded in beauty. She is magnificent. Your caregiving circle is so strong…I am willing to walk beside you on this continuum, support you and be a resource whenever the need arises.”

August 10, 2012: from Lucia’s journal
We are being given permission to be intimate with Elizabeth and with one another in a way that’s not ordinarily possible.

Elizabeth In Enlightenment – she is being completely present, no thought or cares of the past or the future. No ego, no artifice, no irritation or anger, only calm presence, with loving and compassionate smiles.

August 12, 2012: a group email
Dear Ones,

the days flow seamlessly into one another, and time no longer seems to exist in this world we are inhabiting. I have no idea when I last wrote, or what was said, so I’ll try to give a sense of what is true now.
Elizabeth continues to be in a beautiful state, gracing us with her sweet presence.  She speaks little still, and makes her needs known, mainly by all of us guessing and intuiting, then asking her for confirmation.  She expresses no desires, no complaints, no irritation or boredom, though she will have an opinion if we offer her choices of what to eat, or which shirt to wear, etc.  She seems content, and smiles are her main expression.  She is loving and patient with us all, accepting of our desire to please her. Gives us long thumbs-up when we’ve put her in a new position and ask if she’s comfortable, with a smile:
Elizabeth Blue, hospice, enlightenment,

Elizabeth giving us a thumbs-up

These last few days we’ve had Greg, her dad, here, and Victoria, her godmother, and there’s been a really sweet bedtime ritual of hands-on pouring love into her, with all of us gathered.  Zelie (my partner) has sung her a lullaby and she has fallen asleep this way some nights.  It feels like such a gift she is offering us all, this time together, and with her.  Here we are finishing up (missing Julianna (her sister, my younger daughter), who’s been a part of all of this too):
Elizabeth Blue, hospice,

Lovely family bedtime ritual

Elizabeth’s appetite has increased, so she’s eating well, several small (sometimes large) meals a day, (I’m sure helped by the wonderful food provided by Victoria, and last night Greg made Elizabeth’s favorite of bruschetta!), drinking plenty of water, tea and juice, and still appears to be losing weight.  We’ve all been eating dinner together sitting with her, as she says yes when we ask if she wants that now.  She has been on minimal medication, a couple days this week she had some pain, but mainly in her hip, which has gotten tweaked from positioning perhaps, though we’re being careful as can be as we turn her and try to find the most comfortable positions.  Just ibuprofen and tylenol is all she’s needed, and several of us are doing energy work on her as well. This just changed today, as she’s been having pain in her neck (where we believe the cancer had spread), a wound on her leg that’s slow to heal, and her hip, so she’s needed more pain meds today than in the last week combined.  Every day is different, and we all try to stay in the flow, in the moment.
Some of us sense that while Elizabeth is still here, she is also connecting with other worlds, other realities, weaving a web of love that will help to carry her into this transition and beyond, that will help us stay connected with her in spirit once she leaves her body.  Here is a beautiful image, with a lovely golden heart on her brow, that was visible in all the photos, though not to my eyes. She has rose petals on her arm, and a beautiful crystal on her heart.  She’s been holding that crystal most of the time since it was gifted to her:
Elizabeth Blue, acceptance, hospice, enlightenment

Elizabeth Blue with rose petals and a golden heart

She is very sensitive (as always, but intensified) to those around her, the moods, energies, etc.  This morning I’ve had the luxury of sitting alone with her, and put on Constance Demby’s Sacred Space music (Elizabeth most often says yes to music – Ashanna’s crystal bowls, Beyonce, Mozart, mostly soft relaxing music, though sometimes rap) and went into heart meditation, and she joined in and fell deep asleep, even now the doorbell just rang and didn’t disturb her…She is mostly accepting of whoever and whatever is being presented, and seems to adapt her process accordingly.
I’d been giving her some homeopathic remedies that had been recommended, and she took them willingly, but yesterday I had the sense that she really didn’t want or need to be taking them, and when I asked her, she said no, she didn’t want to take them.  I sensed, and asked, “you want to keep it simple?” and she nodded.  That feels like the main message I’m getting – keep it simple, tuning in, being present with her when we’re with her, accepting what she has to offer, to the best of our abilities…
Yesterday was the deepest peace I’ve felt in a while, even on my walk with our dog Tilly in the neighborhood, which is when my sadness usually emerges – seeing the college students moving back in, preparing to start the semester, and listening to my internal story of how Elizabeth won’t be among them.  But yesterday there was an ability to stay present with the peace I feel when I’m with her, in each moment, and carry that with me out into the outside world.  I am grateful for that, and for each minute of each day that I am able to spend here with her.
sending much love and the hope that you can all feel Elizabeth’s love and presence from here,
Lucia

A Long Journey from the ICU to Hospice – Emails from July, 2012

These entries from my emails and journals from July, 2012, one year ago, tell the story of the hardest period in my daughter’s time of living with cancer.  Elizabeth Blue was in the ICU after a recurrence of lymphoma in her brain.  Since June 12, 2012, she had had two rounds of chemo which did not shrink the tumor, followed by brain surgery in an attempt to remove the tumor, which removed some, but also caused massive swelling in her brain. This necessitated a second surgery to remove some of her skull to give her brain room to expand, followed by a stroke. Even with all this, I was still holding the vision of her full recovery, now including rehab for her to learn to walk again.  Though I could feel the weight of all this news preparing me, I was angry at the nurse who first mentioned the word hospice.  I’m now grateful, as it finally propelled me to ask the doctors for a realistic assessment of what we could expect. And then, the ultimate devastating news, that there was no more treatment, and we should consider hospice care.

Though this was extremely difficult, the grace and radiance of love was immense.  Even as I read back through this period, I’m astounded at what we were all able to be present for, and that we did not simply endure, but our hearts expanded and opened more fully than I imagined possible.

7/22/12
Hi all,
sorry i don’t have good news – Elizabeth had a stroke which is affecting her legs – as of this morning she can’t move them.  They can see from the scan that nothing else is affected. They believe it’s because of the swelling (in her brain), and that is putting pressure on small arteries – one must have bled and that’s what caused the stroke.  This is devastating, but they are hopeful working with rehab will help, though that is down the road a ways.  She doesn’t know this, at least we haven’t said it directly, though she was sleeping in the room with pain meds when the doctor was telling us and showing us the MRI.

She still has the breathing tube in which is very uncomfortable, although she’s breathing fine, they’re concerned about when she gets too relaxed with the pain meds that she won’t be able to clear her lungs and throat.  I’m pushing to get it removed, but of course am concerned about her safety as well.  Hopefully tomorrow…They don’t want to take it out and have to put it back, which of course i don’t either.

The good news:  She is able to understand all we are saying, and responding well with yes or no with her head and her right hand.  She can follow requests easily, like to stop biting on the breathing tube, though it’s hard not to do, since it’s so uncomfortable.  They are giving her more anti-anxiety meds today, which should help some.  They expect her to be able to speak fine, once they take the tube out.

Her left hand is still not moving, but that’s from the continued swelling in the brain, and the doctors are sure that will come back once the swelling lessens.  The problem is they’re trying everything and nothing seems to be reducing the swelling.  It’s not increasing, but not decreasing either.  Her face is less swollen, and she can open both eyes today, which is good.

That’s all for now. Thank you all for your messages and love and prayers.
much love,  Lucia

July 22, 2012 – Lucia’s journal

today Elizabeth had a stroke. i can’t believe i’m writing that. this is not entirely unexpected, even though she’s 22.  she has lymphoma, that recently reappeared in her brain, and there was concern she could have a seizure that would lead to a stroke, but this happened because the tumor and/or swelling of the brain, is putting pressure on small arteries, and one of them must have bled. that’s what they think. so the nice young Indian doctor, neurosurgeon resident shows us, me and Greg, the father of Elizabeth who I was once married to for 11 years, the MRI done this morning.  they did this particular MRI because this morning she couldn’t move her feet, so they were suspicious.  suspicious is not a good thing when you’re in the ICU in critical condition.

July 23, 2012 (still in ICU at UMC hospital) – Lucia’s journal

stayed up with her all night, the anniversary of my father’s death. sitting vigil, not wanting her to leave to be with him on this potent day. praying all night to my ancestors, her guides, all the forces, asking them to have mercy. she stayed that night. 

7/24/12 – hospice 

Dear friends and family,
I am exhausted, with a long night up with Elizabeth last night, and pretty devastating updates from the medical team.  They (her oncology doctors) do not think that going forward with chemo or radiation will have any significant benefit, and would have side effects that aren’t worth the possible short additional time it might give Elizabeth.  The neurosurgeon is clear he can’t operate again, as the swelling in her brain is too risky, and he’s already removed the tumor he could access  So this leaves few options, other than prayer, love and miracles.  They are recommending hospice, once we get her stable enough to move out of the hospital.  We do keep hearing stories of people who were told there was no hope, and then recovered from different means, so I’m open to a miracle, and I’m also preparing myself for the end of her life as best as I can.

Elizabeth still hasn’t been able to speak, as the breathing tube/ventilator is still in, though every day they’ve been hopeful she’ll have enough strength to remove it, and now “promising” tomorrow morning, but each time they’ve been worried that she will be fine for a while, but not have the strength to breathe on her own after some hours, and would have to reinsert it.  They can do that, it’s just traumatic.  I think they understand that at this point, it’s a priority that Elizabeth be able to communicate her wishes, so I think it will happen tomorrow.

Elizabeth is being quite clear about what she wants (ie who in the room with her – mainly me and her dad, Greg, etc), but with only yes and no, and some one-handed communication, it’s limited.  So hopefully when they do take out the tubes, she will be able to speak!  It’s so uncomfortable, she tries to pull it out when she gets a chance.  She knows generally what we’ve heard from the doctors, and her spirit feels very low.  That was just this afternoon, and we’re all full of emotion….We haven’t yet asked her if she wants to try treatment still, or if she just wants to try to come home.  Tomorrow that conversation will happen I think. She will sleep better tonight hopefully, with some good sleep meds, so we should all be better rested in the morning – I’m home and Greg is in her room with her tonight, and Victoria (close friend and godmother) is sleeping in the hospital too, in a small family/waiting room.   My mom is here and Julianna (my younger daughter who was 19 then) of course, and everyone is being so wonderful and supportive.

much love to you all,  Lucia

Jul 26, 2012 (my responses to emails from friends)

it feels like the decision is made, but we never know what the divine has in store for us until the next moment…

…staying present with what is, and in sorrow and  much gratitude…

…she is so blessed with such grace, and i can feel she is being held in the arms of the divine. as are we all.

7/27/12
Hi all,
thank you all for your continued prayers, love and the work all are doing on behalf of Elizabeth and the rest of us.

Elizabeth came home from the hospital yesterday at 5pm and is comfortably settled in her (hospital) bed in the living room.  My sister is here and my niece, my mom is still here, Elizabeth’s dad, Greg, is staying as well, and her grandparents from Boston came yesterday. Julianna is incredible, so present and loving and tuned into everything that’s going on. I’m in awe.

The hospice people have been wonderful, and especially Ann Marie, our dear friend and Elizabeth’s doctor, has been amazing, helping get her settled, with meds and everything we need.

Elizabeth is able to speak, though very quietly, and is really sweet, expressing lots of gratitude (every time someone brings her something or does something for her, she says thank you, even when they’ve already left the room – hard to describe the childlike innocence and beauty in this.).  She is different, speaking slowly, and usually only in response to a question – she says her mind is quiet.  She is also drinking lots and eating in small amounts.  She is present, and also feels far away, more peaceful, with less anxiety and agitation since coming home from the hospital. She’s not asking many questions now, and isn’t even interested in having her beloved cat Blue come visit her.

Today was full, with hospice folks (nurse, social worker and chaplain), and then E’s best friend Samantha came and showed her the tattoo she got yesterday of E B (for Elizabeth Blue) on her arm (made us all cry – Elizabeth has always told Samantha she should get this done, and when she heard about it this morning said now she knows Sam really LOVES her), and shared stories of dozens of E’s friends here who sent their love and tears and stories with her. Finally a friend who does sound healing came and played the crystal bowls which Elizabeth loved, and it was a beautiful experience for all of us.  The radiance in Elizabeth and in the room is incredible.

I know it’s devastating for all of us to lose her, or even the idea of losing her, and I imagine for those who aren’t here it might be even harder.  If I stop and feel what this looks and feels like from outside, it feels overwhelmingly sad, but when I’m present  in each moment it feels fine.  The minute by minute process is beautiful and grace-filled, and I am truly blessed to have this time with her, and for so many of our family and friends to be close by.  It does feel like she is at peace, doing whatever she needs to do to complete.

There are many (hundreds even) who are doing prayers and healing work for Elizabeth all over, and I think this combined with all the love here is helping us through this incredibly difficult passage.  It does not feel like the time to go searching for miracles, but to be fully present to the miracle that is happening in each moment. We are still in the 40 day healing intensive that Elizabeth and I started July 2 and it goes til August 12. I know that healing takes many forms and looks different for each of us, and I have to trust that this is exactly the healing process we need, even though it’s not our preference.

Here’s a photo of Elizabeth from today.  She is even more beautiful each day.

love to you all,
Lucia

Elizabeth Blue, hospice,

Elizabeth’s first day at home in hospice

July 29, 2012 (from an email to a friend)

…she is being showered with love and is a radiant state of grace. it is heartbreaking and breathtakingly beautiful.

Elizabeth Blue, Lucia Maya, hospice,

Elizabeth Blue at home in hospice

7/29/12 (to a good friend)

hi John,
she knows she is dying, and is speaking very little. mostly if spoken to, she’ll reply or respond to a question.

when i was asking her questions yesterday about if she wants to be resuscitated if she stops breathing etc, she said no, and then i asked about who she wants to make decisions if she can’t verbalize and she said me, and then i asked if there is anything we can do to make her more comfortable, and she said, to stop asking questions. love it.

so i don’t think she cares about anything beyond the moment right now, and planning for anything, even if she wants to eat something doesn’t make sense to her, or matter.  she’s beyond that.

i trust we will know what she wants and if it comes to ask any specifics i will.  i’ll ask if she’d like to see you though, if you feel called to come?

3 people leaving today, my niece, stepmom and Greg. leaving my main support of Tashe (sister) and my mom, plus my stepdad who’s being lovely and mostly present and quiet. julianna is extraordinary.   my brother comes later in the week for a couple days.

zelie (my partner who had been in Hawaii during these last 7 weeks) is asking me if i still want her to come back early, after the retreat is done, rather than a week later, and i can’t tell her. i’m like elizabeth right now, so in the present moment, don’ t know what i want later today let alone next week. i know i’m not the same person, i can’t give much to anyone for a while though. i need to be in here. i know you understand.

i would love to see you though. you bring me a certain comfort like no other. and i imagine for elizabeth too.
love, Lucia

7/30/12 an email to our Tucson community and my clients

I am taking a hiatus from my outer work while I focus on my family.My older daughter, Elizabeth Blue, is home under hospice care now, and she is being showered with love and in a radiant state of grace. it is heartbreaking and breathtakingly beautiful. The radiance in Elizabeth and in the room is incredible.If I stop and feel what this looks and feels like from outside, it feels overwhelmingly sad, but when I’m present in each moment it feels fine. The minute by minute process is beautiful and grace-filled, and I am truly blessed to have this time with her, and for so many of our family and friends to be close by. It does feel like she is at peace, doing whatever she needs to do to complete.

There are many (hundreds even) who are doing prayers and healing work for Elizabeth all over, and I think this combined with all the love here is helping us through this incredibly difficult passage. It does not feel like the time to go searching for miracles, but to be fully present to the miracle that is happening in each moment. I know that healing takes many forms and looks different for each of us, and I have to trust that this is exactly the healing process we need, even though it’s not our preference.

I appreciate all the heart-felt suggestions and questions, but I am spending as much time as possible being in her presence, in our heart connection, and will not be online much these days.

I will not be scheduling individual clients or classes for the time being.

love and blessings,  Lucia Maya

7/30/12 email to a friend

it feels to me like the path is being cleared/has been cleared for her to leave with grace, and my job is to assist in this as much as possible…

some friends are still making suggestions about different remedies to try, and my sense is that to get our hopes up now is too heartbreaking, and best to focus on being present with what is…i’m an eternal optimist, but my optimism is now focused on facilitating this transition as her healing process…

and of course remain open to ALL possibilities.

7/31/12 (to a friend)

oddly, as incredibly sad as i am, the one i know is already gone, and i’m grieving that loss, and the one who is here feels like she’s clearly on her own journey out, so the hope i feel is largely about the passage being peaceful and gracefilled…and just what she needs it to be.

8/1/12 another group update

Hi,
Elizabeth is doing well here at home, very restful, at peace, very quiet and in no pain. she’s on almost no medication now, eating little, drinking some (for some reason every time she drinks at all, she drinks to the bottom of the glass, like it’s just what you do…), observing, but not engaging much unless she’s engaged and will answer questions, usually with a nod yes or no. otherwise she’ll just listen.  she makes her needs known still.

She’s being very well cared for and loved. lots of family and some friends, so much that i’m playing gatekeeper to help keep the energy quiet and slow, as she seems to prefer. Or at least I do!  just trying to keep track of who’s coming and going is a lot, but mostly i’m not trying to, just letting people text when they want to come, and saying no if it’s not a good time…

Zelie is coming home tonight, which will be wonderful to have her presence and support in person, though her support has been tremendous from hawaii too.

Tashe (my sister) is amazing, doing everything from feeding E, massaging her, sleeping on the floor in the living room with her, to a project where she’s hanging beautiful fabric by the back door so everyone who enters that way will slow down and remember they’re entering into sacred space. Everyone here is contributing in their own way, and it’s beautiful how everything gets done and Elizabeth is being so loved and nurtured.

I found some of Elizabeth’s wonderful poetry on my computer, and wanted to share a couple. This first one is  from 2005, when she was just 15.  The 2nd one, “Obama” poem, I’m including the email intro she wrote then, which i love too.
love to all,  Lucia

© Lucia Maya, 2013

Poetry by Elizabeth Meagher

Seeping Back

‘I adore you,’ one moment of holding this, ‘God’ in all parts of my body

Devotion, my mysterious master

‘Don’t adore me’ in cupped hands not holding

Seeping back to the river of eternal life.

Devotion, my mysterious master

I saw the crossroads, one forever movement of light

Seeping back to the river of eternal life

Coming through the body back to the heart of center, back to the sexuality of breath.

I saw the crossroads, one forever movement of light

I felt the gift, one moment of holding forever, ‘I adore you’

Coming through the body back to the heart center, back to the sexuality of breath

This place of unknowing, eternal, unjudged, finally let be, ‘don’t adore me.’

I felt the gift, one moment of holding forever, ‘I adore you’

I am waiting for our hearts to be conjoined in the endless breath

This place of unknowing, eternal, unjudged, finally let be ‘don’t adore me’

Whisper of eternity that says I love you.

I am waiting for our hearts to be conjoined in the endless breath

Why can we not meet at the simple movement, place of undying peace and satisfaction?

Whisper of eternity that says I love you

For if we were to meet in that place there would be nothing left to live for.

Why can we not meet at the simple movement, place of undying peace and satisfaction?

‘I adore you’

For if we were to meet in that place there would be nothing left to live for

Seeping back to the river of eternal life.

© Elizabeth Meagher 9/11/05

Hello All,
I just came across this poem I wrote about a year ago when Obama was in the primaries.  It reminded me of the excitement and love I had for him then when he was still just the bud of a revolutionary idea.  It also inspired me to further appreciate him now.

Thank you for humoring my raw and unedited writing, much love to you all.
-Elizabeth

Obama

We need you.

Us, a people who have slowly descended

From the dream of our ancestors.

Us, a people fallen from grace.

We need you to be our Father

We need your gentle strength

Your wise eyes.

We need your pride and your love

We need your working hands 

Your compassionate mind

To mold our broken humanity

Back into something palpable

And whole.

We need you to remind us of our morality

Our passion that built this community — America.

You who see the best in us

You with trust and hope and unconditional love,

We need you.

We need a leader who will stand tall

among those who cower.

A man who will be brave enough not to drop bombs.

We need a new Father for our country.

One who knows the light in his daughter’s smile

Like a heartbeat.

One who sees the beauty in the shadows

In the tired and poor.

One who will lift the broken body

Of our country from her dying bed.

One who will see that she can be healed with compassion.

We do not need you for our strengths

Our weapons

Our corporations

Our wealthy.

We need you for our schools

For our Grandmothers

For our bus systems

For our foreign policy.

We need you

Standing tall

Standing proud

To pave the way for our future Hillary Clintons.

We need you for your healing tears.

And the resonation in our hearts

That our love is yours.

© Elizabeth Meagher 2008

The End of our “Ordinary” Life – early July, 2012 emails

EARLY JULY
As I share these emails, from early July of 2012, I realize this is the last period of time when we were living an “ordinary” life.  Granted, my definition of “ordinary” had shifted, given that Elizabeth, my 22-year-old daughter, had already been through one course of chemo for lymphoma and was in remission within five months of her diagnosis; that the cancer had recurred in her brain and her spine only two and half months later; that we were now hoping for the tumor and surrounding swelling to have shrunk enough for a neurosurgeon to implant a reservoir in her head that could deliver the chemo drugs more directly to the tumor; and that Elizabeth was now moving in with me, for a 40 day Healing Intensive so that I could help support and care for her, and so we could together use all the tools we could find or imagine, to invite and facilitate a miracle.

Elizabeth Blue

Elizabeth June, 2012

These emails are from the last time that Elizabeth was still the daughter I’d known for 22 years, with much of her strong personality intact.  Extremely articulate, a deep thinker with incredible wisdom and confident in many ways.  She was beautiful and vain, taking at least an hour to prepare for going out, trying on as many outfits as it took to find just the perfect look for that next event – something she’d been doing since she was 2 years old, along with changing many times every day. She loved clothes and her appearance was one of her great forms of artistic expression, always unique, getting away with wearing things that would have looked odd on most anyone else, but lovely and daring on her.  She was also insecure in certain areas, afraid her friends would forget her if she wasn’t able to be present in all her usual ways – hanging out with Samantha and “the boys”, going out dancing and to shows, working as a barista and at a piercing apprenticeship, going to yoga.

She was scared, aware of the challenges she was facing, yet mostly calm. She was willing to take unpleasant-tasting powders and supplements 3 times a day, without complaint, prescribed by the oncology naturopath, use hypnotherapy, guided imagery, and try a “medicinal” raw food diet with very limited foods.  She and I had twice-daily “check-ins”, to share and discuss anything that was coming up for us emotionally, and she wouldn’t miss them, even when she was exhausted and dizzy with side effects from the steroids and anti-seizure meds she was on.

She prepared for her second and third rounds of in-patient chemo like the divine warrior she was, making conscious choices to bring a semblance of control wherever she could, creating sacred space in the hospital room, with our own decorations, clothing, food, altars, art supplies and books.

If you are following our journey of last year, these emails are detailed summaries of what our days were like as we moved into a greater awareness of the preciousness of life, and the precarious time we were approaching.

Emails from me to family and friends:

7/1/12
Dear Ones,

tomorrow (Monday) Elizabeth goes to UMC to receive her 2nd chemo and is expecting to be there til Wednesday, though it could be Thursday, knowing how things run there.  She feels well prepared, in all ways.  This is the first time she’s getting to pack and bring what she wants with her, rather than coming in with an emergency…

We have a plan in place that I feel excited about – Elizabeth will move in here after getting out of the hospital, for a 40 day healing intensive with me.  It will mean eating whole foods, (which soon changed to all raw foods), getting plenty of time together, working with whatever comes up, physically and emotionally, and doing all the treatments already planned, chemo, supplements, other meds, etc..

It does mean I will not go to the Hawaii Retreat as planned (an annual 6 day workshop my partner and I offer, with participants already registered), and Zelie has lovingly and generously offered to do that on her own.  It feels important for me to be here with Elizabeth for this time.
love, Lucia

On Jul 2, 2012, at 8:04 AM, Elizabeth Blue wrote, to the Nurse Practitioner in charge of her care at the Cancer Center:

Hello Sandy,
Hope you are well.
I wanted to check in about my admission to UMC today (7.2.12).
You had said I would be contacted when they have a bed for me but I don’t know exactly who will be contacting me (You? Someone from the Cancer Center? Someone from UMC?)
Any idea when I might hear from them? And is there is a point when I should contact them someone if I haven’t heard anything? (And who would that person be, how do I reach them etc.?)
Sorry for all the questions, first planned admission seems a bit mysterious. Thank you for your help
-Elizabeth Meagher

On Mon, Jul 2, 2012 at 9:11 AM, Lucia Maya wrote:
great email sweets.  we just wait now…I’m ready, will just put the stuff from the fridge into the cooler, so i can be ready in 5-10 minutes at any point…

feels like when waiting for a baby to come… get packed and ready and then wait. Not quite as exciting of course. But each treatment I see as a new birth, moving you into your new self, your new life…

love,
Mom
Wonderful, I am pretty much ready too, just preparing the last few things..
Reminds me of waiting for a baby to come too ( :
See you soon.
Love
(E)

Elizabeth Blue with Grandma

Elizabeth Blue with her Grandma

Elizabeth Blue in Tucson, Arizona

Elizabeth Blue at home July 1, 2012

Elizabeth Blue, raw food

Elizabeth and Kathleen sharing some delicious raw food

7/4/12
Hi all,

I’m now realizing Elizabeth has been here in the hospital a few days and I haven’t emailed, because things are going really well…She received chemo the first day, Monday, as her pH level was at 7 when she arrived, which is great. That’s the alkaline level needed for the body to be able to process the chemo safely. She’s also been eating foods that promote slight alkalinity in the body, as there’s some evidence that helps to create an environment that is inhospitable to cancer as well.

So it still took several hours to get started, but she received the chemo in full by Monday evening, and since then has continued to feel well. Once her levels come down a bit more, they’ll take her off the IV and stop the rescue drug that helps the body clear the chemo, so they check again tonight at 48 hours.  Assuming that number is good, they check again tomorrow am, and then she can go home. (In order to cross the blood/brain barrier, which protects the brain from being damaged by any toxins entering the body, they had to give her super high doses of the chemo drugs in the hope that they would be so high that they would push through that barrier, and then they needed to clear quickly so they wouldn’t cause damage to the rest of her organs.)

She’s in good spirits, the room looks beautiful as we brought in photos, scarves and favorite items to create her own space. Everyone who walks in loves it! And of course it smells good, because I brought essential oil sprays too…Elizabeth is eating well, slept well one night, not well last night, but still in good spirits this morning.  The nurses have been wonderful each shift, really loving and sweet, and the doctor this time also lovely.  She’s in great hands.

Also, they are still trying to get a line placed to be able to give future chemo treatment (for one of the meds) and blood draws that way.  There’s been lots of discussion, as the veins in her chest have changed due to the location of her first tumor so they can’t place a regular port or PICC line to have ongoing access to her veins . So they’re looking at the possibility of a port in her leg, which sounds like the best option, maybe the only one right now…It’s frustrating because it’s slow, and she’d like some answers, but they are working hard at getting it resolved. No discussion this visit about the reservoir, as they’re waiting for the tumor to be slightly smaller before they can place it. Hopefully before the next treatment, we’ll have to wait and see…

That’s it for now!

love you all, Lucia

Elizabeth Blue, UAMC, Tucson, AZ

Elizabeth Blue in her hospital room with our decorations

UMC room with altar

Altar in the hospital room

Lucia Maya, Elizabeth Blue

Lucia Maya with Elizabeth Blue, while she’s receiving her 2nd chemo

Elizabeth Blue

Elizabeth Blue, self-portrait in the hospital

Elizabeth Blue's cat, Blue

Elizabeth Blue’s beloved companion, Blue

7/5/12 from Elizabeth to her Integrative Oncology MD:
Hello Marnie,

I was just wondering if you have received any more information regarding whether or not it is safe for me to try taking the medication you prescribed me for sleep with the anti-seizure medicine I am on.
I have tried taking both the Lorazepam and Clonazepam for sleep (not at the same time mind you) and while the Clonazepam helps a bit it is still not really doing the job.  I have not taken the Trazodone yet as I wanted to confirm with you first that this is safe.  But with the steroids I am taking as well, sleep has continued to be difficult to impossible and I am becoming increasingly concerned.  I am also open to alternative sleep suggestions from natural ones to sleep aids such as Ambien (which they have tried in the hospital and sometimes works).  Just getting quite desperate…

I have just finished my second treatment and am being discharged from UMC today which is very exciting.  More news to come on how I am responding.

Also: my mom and I have decided to embark on a 40 day (at least) long process of eating lots of raw, whole, home prepared, foods in the hopes of assisting the chemo treatment.  I am also very interested in trying a tea called Essiac (been used as an anti-cancer tea since the 1920s), which has been recommended to us by various healers and friends.  We are curious if you have any knowledge of this tea and or any opinion on its value, potential or possible negative side effects.  Any info or opinions are very welcome and appreciated.

Thank you so much and best to you,
– Elizabeth

7/5/12 – To a friend:
I have moments when it appears that “this shouldn’t be happening!”, but mostly once I feel that, it shifts to “truly this is meant to be” and there are amazing gifts coming out of this, MANY still to be revealed…

Headed out of UMC today, yay! All went extremely well. Just super tired, last night was almost no sleep and I do not do well with little sleep!  but can’t seem to nap either…

Home now.. Elizabeth rested and went to her house to pack, then we’ll go and help load up some stuff… she’s bringing her cat, and hopefully not too much stuff. I’m having a minor meltdown, internally, at least.  She moved out in anger at 17, so it feels right that she’s moving back in for these 40 days, doing it consciously, and then leaving in a different way, consciously and deliberately.  It brings up all kinds of fear though, that she won’t leave, that she won’t want to, that she’ll be “too sick”, etc..

I feel like so much is unknown in our situation, and yours too, and the tension is the really challenging part!

love you mucho,
Lucia

7/11/12
Hi all,

quick overview update:

Elizabeth is now scheduled Thursday am for a port, to be placed in her leg vein, (an access site under the skin to a vein, where they can infuse medicine, plus do blood draws, which will make life in the hospital so much easier!) which could take all day, and Saturday afternoon she has an MRI, outpatient. They will see if the tumor has shrunk enough yet for the cranial reservoir to be placed before this next treatment starting Monday.

Saw Sandy (main oncology NP) with E yesterday – she said there was “enormous progress” just from the first treatment, seen in the first MRI, so that was a huge boost, and good news.  Her blood work yesterday looked great too. Her white count was normal, and her liver is doing well with the treatment.

Kathleen (our dear friend) drove out for 3 days from Colorado and was immensely helpful – with food prep and teaching, listening, hypnotherapy,  playing harp every morning – so many gifts! I told her it felt like our fairy godmother was arriving.  I am amazed how much support Elizabeth, and I, have here.

Julianna (Elizabeth’s 19-year-old sister, home from college for the summer) is wonderful, always sweet and helpful, doing food shopping, helping with everything, including her wonderful presence of love.

There’s so much to do every day, we still haven’t got E fully moved in here, there’s laundry, food prep, medical appointments almost every day!  Elizabeth is amazing, moving through all these appointments, making healthy food, sitting and talking with me when there’s a lot of emotion to process, working hard at getting sleep  (the steroids make that difficult, but working with a variety of things to help, she’s getting maybe 7 hours now, better than the 3-4 she was getting), getting a bit of time with her best friend still, and trying to care for herself body, mind and spirit – it’s a full-time job and she’s doing it with much grace and beauty.  Lots of healing happening, of all kinds!

The last time at UMC, the preparation was essential to having a positive experience. We packed food, beautiful things for the room, clothes she likes, etc…and it all takes time, though some is still packed and ready.  Getting ready for Monday at UMC, my mom is coming tomorrow night to help, and Tashe (my sister) the end of the month – yay!

love to you all,

Lucia

7/11 to my mother, arriving for a visit soon:
Hi Mom,

now I’m having doubts about going to the class Sunday (a raw food class, as we’d now moved into a full-on raw food diet, which we planned to continue even at the hospital)… There’s so much to do every day, Elizabeth was overwhelmed by your simple request for measurements at her apartment (they were going to install some shelving), and is easily stressed to the point of tears.  It’s good actually that she’s crying, because that’s been hard for her in the past, and I think an essential part of the healing process.

I talked with Lisa (my pediatrician cousin, as her father and I were starting to explore the possibility of getting a second opinion about Elizabeth’s treatment options) last night, which was good, but put me into overwhelm with possibilities of other options, UCLA pediatric oncologists, etc.

I’m glad you’re coming! and i want to ask that you be as soft as you know how… E’s moving really slowly, and very frustrated by this (though at times seems normal and quick and then gets tired and slows waaay down).  It’s hard to watch, and I’m working on patience myself.  Really having to move at a different pace…
E’s worried that she won’t be able to do all you, and she, want to do, won’t be able to please you, etc…so gentleness, slowness and patience are all called for now. Thank you for listening to all this!

love,
Lucia