Tag: Parenting

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

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

September 17, 2013
Elizabeth Blue’s Life in Pictures

Elizabeth Blue, 4/2012 (by Jade Beall)

Elizabeth Blue, 4/2012 (by Jade Beall)

As we move closer to the one year anniversary of my daughter Elizabeth’s death, on September 23, she is very present with me, giving me many messages and signs that she is close. I will share more of that in another post. For now – I am getting the message that it is time to share this video again. This is a slideshow of Elizabeth’s life, from beginning to end, with many of the people, animals, events and passages in her life.

The professional photo shoot done during the last year of her life was done by Jade Beall, who recently dedicated a blog post with photos and story of that photo shoot, and I will be sharing many more of those extraordinary photos soon. Here are 2 favorites.

This slideshow was created with love and is shared with love. (And you might want to have some tissues handy…)

September 8, 2013
Assumptions About Life and Death

Assumptions: things that are accepted as true or as certain to happen, without proof

There are many things we live with as givens, as assumptions that we don’t even know we believe. Even when we do our best to live with great awareness and consciousness, they still creep in, so universally accepted in our world, that we don’t see the possibility that they could not be true.

Elizabeth Blue – at the Grand Canyon, January, 2012

As I was sitting with my older daughter Elizabeth last year while she was moving towards her death, I had time to reflect on many assumptions I’d made about her and her life: That she’d live a long and fulfilling life. That wherever we both lived, we’d continue to talk, communicate, and see each other. That no matter our differences and hurt feelings, we’d continue to dive deep into our inner worlds and find places in common and communicate about what we wished for, apologize for any ways we’d hurt each other, and let each other know how much we loved and appreciated each other.

In some ways the assumption about her, or any of us living a long life was foolish, having grown up close to my grandparents, who’d watched both their sons die young, my uncle and my father at ages 21 and 30; I had watched several friends die of cancer who had young children they’d planned on raising; I’d worked with people dying of cancer, including children and young adults, years before Elizabeth had been diagnosed with cancer…so I knew this was a possibility in life. However, I believed as so many do: not to me, not to my family, not possible, please.

August 19, 2012 from Lucia Maya’s journal – Assumptions

The things i didn’t even realize i was counting on. Assuming without knowing: that Elizabeth would grow up and outlive me. That she’d have a career, whether as an English professor, as she talked about, or a body piercer, another idea that seemed more a youthful way to make some extra money, I didn’t know. Perhaps owning a vintage clothing store, or as a successful writer…

I assumed and hoped: that she would have long term relationship(s) with someone that she would love and find happiness with, that I might like, hopefully marry one of them someday, a wonderful man/woman who loves and adores her, and makes her happy, inspires her creativity, and that they would have children together. That I would have grandchildren to come visit, wherever she lived.

That we would have lots of time to talk and get along, to have intimate conversations and have times where she couldn’t stand me again. Where she desperately needed me, and times when she was so in love and busy she couldn’t answer my calls or texts.

Times where I’d worry if she was happy, had anxiety, was fulfilled, was never going to fall in love; have high enough self-esteem; recover from whatever emotional damage I’ve inflicted, or ways life traumas have wounded her…

It is this loss of the innocence, the loss of all these beliefs and assumptions and my stories of the imagined future that cause me the greatest grief. It is when I go back in my mind to see a “movie” of Elizabeth as she was, and that picture of her in the past holds all these assumptions and beliefs of what was still to come, and it is heartbreaking. All the stories that will never come true. The conversations never had, the joy and the anger and the fear and the wedding(s) and the grandchildren and the growing old, and the love, always the love…

So I take and am grateful for what I still have – the love, the conversations I can still have with her now in spirit, when I listen closely I hear her. I know she is always with me, and the present and the future will look different than what I assumed, and I do the best I can to accept and even love this life, as it is.

August 25, 2013
Moving Into Grace – With Hospice

This week it has been one year since my daughter Elizabeth had 2 brain surgeries. The first one, July 19, 2012, we hoped would remove the cancer from her brain, and the second on July 20 was done to save her life (for a time, anyway), as her brain had started to swell, and the neurosurgeon needed to remove part of her skull to allow space for the swelling. I anticipated that with these anniversaries, I would be brought back into the memories of that time. That I would relive all the sadness that came with learning that the surgery was not successful, and then that there was no more treatment and Elizabeth was not going to survive very long, most likely a couple of months.

Yet grief is rarely predictable, and I’m feeling peaceful, relaxed, perhaps a bit disengaged, but also very present. Even when I try to go back into the story, it is not enough to move me into grief. I was worried that I was becoming numb, but I am full of feelings, one after another, from sadness to gratitude, to joy.

I am not numb – when I talk to a new friend whose son also died, I am moved to tears when she tells me how seeing photographs of Elizabeth moves her so, and that she wishes she had lived so she could meet this amazing young woman. I was immediately aware, however, that she would not even know who Elizabeth was if she were still alive. Her writing, her wisdom, her beauty was not available to so many while she was alive. And so I find myself grateful, for Elizabeth’s life, and even in some bizarre way for her death – that if this was her time to go, that she did it with such grace, and that her writing and beauty is reaching so many.

Here are some of my writings from one year ago:

July 23, 2012 (still in ICU at UMC hospital)
I 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.

July 29, 2012 (now at home with hospice)

Yesterday was a day of almost blissful peace, radiant grace and devotion. Today, I was kept awake after reading an email depicting the possibilities of a painful and frightened death for Elizabeth, and I couldn’t sleep, wanting to find someone to blame – the surgeon, (he shouldn’t have given us false hope, when he must have known he couldn’t remove the whole tumor), my partner Zelie, (for not being here, not wanting to be here so desperately she’d just jump on a plane without asking). But knowing that there is no one to blame, each is playing her/his part just perfectly, divinely orchestrated, and I’m truly grateful that Zelie is clear about where she needs to be, and she can’t help me here right now.

So today I’m more in that shattered grieving place, almost unbearably sad, but not unbearable at all, no story with the sadness, and even with the grief and the loss, aware it’s just another feeling and I can actually enjoy the experience. My worst fears are being realized (some of them at least) and I am in such a state of grace, being with Elizabeth in her radiance and her presence, that I can be at deeper peace than in my daily life. This slowing down time is just what i need. If i go into stories of who she might have been, grandchildren never conceived and born, no wedding and falling in love, no more writing and being seen as an amazingly gifted writer… and on and on, then I can be devastated, though not right now as I write this. Right now I see the story may all be about me anyway. Me having new “babies” being birthed, me falling in love and getting married, me writing and getting seen as my gifts, and hers, get shared with the world.

Elizabeth at home in hospice with her cat Blue

Elizabeth Blue and Lucia Maya, at home in hospice

Victoria (my long-time friend and Elizabeth’s godmother) just called us soul mates, me and Elizabeth. E has written about us sharing the same heart, and I am certainly in the same field she is right now. I can’t think about much other than the moment I’m in right now. Elizabeth told me, when i was telling her of her friend Cailin’s planned visit an hour later yesterday, that I don’t need to tell her those kinds of things, meaning anything beyond what is literally right in front of her.

I asked her a few serious questions yesterday: if her heart stopped or she stopped breathing, does she want us to call 911 and have her resuscitated – she said no; and if she’s alive but can no longer make her wishes known, who does she want to make decisions for her – she pointed to and named me; and finally I could tell she was tired, so I asked if there was anything we could be doing to make her more comfortable, and she said “stop asking me questions”. I loved it. And stopped.

Today when she asked me how I was, as she does after I ask her, I said sad. She said she knew, and asked why. I told her I was going to miss her, and she asked when? I said I thought she was in the process of dying and I would miss her when she was gone. She asked what i thought death is, and I said when we leave our body. And that i’ve heard from many people who’ve died and come back that it’s a beautiful experience, more beautiful than anything in life, anything they experienced on earth. She nodded. I said I wasn’t sad about what she’d experience, I was sad about my experience of missing her, but I know her spirit will always be here. She nodded. I told her I had thought she’d always be here, and that was why I was sad.

Elizabeth’s been saying since her rediagnosis that she is going through a rebirth, and she went all the way back to the pre-birth state in the hospital: unable to speak, or even make sounds, unable to open her eyes, then being born: with the (breathing) tube pulled out, able to speak and breathe on her own, but still totally depending on others with a feeding tube and IV fluids, then removing those, and starting to swallow, to drink and eat, to speak again. And now, at home, still dependent, and yet completely reborn, with divine wisdom and no mind. Quiet Mind she calls it. She seems to be completely comfortable and at peace.

It occurred to me, that for her to get to this state of peace, she was willing to go through cancer in her brain, 2 brain surgeries, a stroke, and now the deathing process, to move into this state of grace and divine mind. and not just for herself, but for so many around her, touching countless lives.

E’s been seeming farther away now. Not so much in her own world, as she’s been, but less of anywhere.

Elizabeth Blue at home in hospice

And we began our journey into hospice…

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July 21, 2013

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

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.

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.

July 7, 2013

Anniversaries

Yesterday was June 12. Last year, June 12 was one of those life-changing, earth-shifting days. That day, we discovered that my daughter, Elizabeth Blue, had a recurrence of lymphoma and that there was now a fairly large tumor in her brain. I didn’t allow my mind to comprehend the potentially devastating outcome of this, with my usual brand of optimism that can border on denial. I knew it meant more treatment, more life with cancer, and a loss of the apparent freedom and joy that Elizabeth had had a taste of the past 3 months since she’d finished chemo. I remember going outside in the Arizona summer heat, sitting on a tile bench near the ER, sobbing while sending texts to our close family and friends with this latest news and not caring or even thinking about whether strangers saw me or not. It was one of those surreal moments when nothing seems real, and everything seems so vivid and defined, all at the same time.

For those of you who are thinking this story is too hard to read, with so much sorrow, please know it may be, but I’m sharing all this because only in going into the depths of the pain and sorrow can I also share the incredible grace and love that emerges. It gets much harder, and then shifts into something so beautiful and numinous…

I’ve already shared the emails from earlier in our journey, which you can find under the category of “Lucia Maya’s Email Journey”. Today it is time to share some of my emails from Elizabeth’s 3rd and final hospitalization. This was initially for a third round of inpatient chemo, but quickly shifted to a time of waiting and uncertainty, as the team of doctors clearly did not know what to do once it was discovered that the chemo was not working, and Elizabeth was having quite a bit of pain. There was considerable anxiety, as we waited for test results, doctors to come back from vacation, etc…After a few days of discussion, the plan was for her to have brain surgery. This would “de-bulk” the tumor, or in one best-case scenario we heard it could remove the tumor entirely, which we desperately wanted to believe. At worst it would buy time and relieve the pain she was having. The plan was to also insert a port into her head (a reservoir) to allow chemo direct access to the tumor and then follow with chemo (trying a new drug) and radiation. What happened was quite different…

Daily emails from Elizbeth’s admission to the hospital through 2 brain surgeries…

July, 2012 from Lucia to family and close friends:

Tuesday, 7/17/12
Hi everyone – finally a new (tentative) plan! Elizabeth waited all day yesterday to be admitted to UMC, which finally happened at 8 pm last night. Then there’s been a lot of discussion about how to treat her…

Saturday, Elizabeth had an MRI, which showed that the tumor had not responded to the 2 chemo drugs as they’d hoped and expected – it was slightly larger and there was more swelling. So we’ve been anxious to hear what they would recommend. The first thought was to try a different chemo drug (ARA-C, rather than the Vincristine), and also try to get the chemo directly to the brain asap.

After much discussion, among the lymphoma specialists who’ve been seeing her (Dr Miller and Sandy Kurtin), the neurosurgeon (Dr Lemole), the brain tumor specialist and the attending hematology/oncology doctor here, the newest idea is that the tumor board will meet Thursday am, and they’re discussing a plan to do neurosurgery to actually remove the entire tumor. If this looks like the best plan, they would hopefully do it this Friday, and would likely follow with some radiation to her brain.

If they decide this is not the best plan, they might then try a different chemo drug. Surgery feels like a really good option, if the neurosurgeon thinks he can get this all done by surgery! The hematology/oncology fellow here who presented the idea was very positive and excited about it, and Elizabeth, my mom and I all feel positive too.

So for now, E is off IV fluids (though her new port is working great!), can eat, just taking her meds she’s been taking, and waiting here at the hospital just hanging out, since they don’t want her to lose her room! They can’t reserve a bed, and want to be sure she’s here to go ahead with whatever plan they decide.

love to you all,
Lucia

7/17/12
Hi,
so Dr Lemole (E’s neurosurgeon) did come in and talk with us, and he’s 90% sure she’ll have surgery on Thursday or Friday, to remove the entire tumor, likely followed by radiation. We’re still waiting to meet with the radiology oncologist, who may have another idea – if he thinks that the tumor can be removed through radiation alone, then they might not do the surgery, but Dr Lemole thought that was unlikely. So this plan still feels like a really good one. It does feel like a potential miracle. Elizabeth feels comfortable with it, she was able to ask him all her questions, re risks (relatively minimal), etc.. the tumor is in an area of the brain that is far from any of the areas that operate speech, and other major functions, it mainly has to do with personality , and he feels confident that she’ll emerge from surgery with no serious side effects. We don’t know the effects of the radiation, but will learn more tomorrow.

The issue is that the chemo drugs that usually work are not, and other potential ones seem to have greater risks than benefits, so the surgery now seems like a really good option. The tumor board will still meet to discuss her situation Thurs morning, but it sounds like all the folks that will be meeting are already in conversation about it anyway…

ok, that’s all for today, what a roller coaster ride it’s been!

love,
Lucia

Wednesday, 7/18 5:30 am
Thank you Sandy, (for her emails telling us there was a plan, and the doctors would be by soon to fill us in)

Dr. Lemole did come to speak with us last night. Sounds like the surgery option is by far most likely (followed by radiation of some kind) and I personally am very happy with this ‘plan.’ And am truly hoping it works out. Thank you so much for your consistent responses and involvement (and continued involvement).

Best,
Elizabeth

7/18/12 – in an email to Elizabeth’s father, who was frantically researching doctors to give a second opinion, and/or newer/experimental treatments, as the team here seemed to be unclear and without a lot of hope. None of these other doctors was even willing to consult it turned out, with the lymphoma spread to her central nervous system, or one would see her if she came to California, which seemed impossible given her health:
Hi G,
Let me know ASAP what you hear from Stanford folks…I do know that everyone here has differing opinions and are working as a team to come to the best decision – so I’m still hesitant about bringing in yet another view AND agree that an outside perspective could be helpful. Sometimes more options are good, and sometimes make something clear feel murky!
…I hope they (his parents) also hear about the immense help and support Julianna (my younger daughter, 19 at the time) is tirelessly providing to Elizabeth as well! Don’t know how I’d be doing this without her… I hope they know just how amazing Julianna is!
Thanks.
Best,
Lucia

Thursday, 7/19/12
Hi all,
so Elizabeth had surgery this am already and she’s out of surgery, but I haven’t seen her yet. some of you got texts with updates…This is just very quick, as I remember from first conversation with the surgeon – details could be wrong, and it could change…

She’s out of surgery and the neurosurgeon came to speak with me – he wasn’t entirely happy. He was able to remove about 80% of the tumor on the right side, where most of it was, so that’s good. There was a part that wraps around a vessel that he couldn’t get to, and when he started to remove the smaller amount of tumor on the left side, the brain was continuing to swell, so he needed to stop the surgery. Usually when you remove tumor, the swelling (which she had) goes down, but in her case it was continuing to swell. So he left an opening with a tube to measure the pressure on her brain over the next few days. They are about to do an MRI scan to be sure there’s nothing else (like a stroke, which is very unlikely) that is causing the swelling.

They will watch the swelling over the next few days. It is possible Dr Lemole will try to do a 2nd surgery to see if he can get more of the tumor, after the swelling goes down – he also said it was interwoven with the brain tissue, so it wasn’t easy to get a clean cut.

The other news is that Elizabeth will definitely need radiation, as they saw another very small spot in the back of her brain they think is an additional tumor, so they will treat that, and whatever is left in the front. And they are talking about trying 2 different chemo drugs for her that they’re excited about.

Just heard they’re moving her from the OR to get an MRI, and then directly up to her room in ICU. She’s intubated right now, meaning a machine will be breathing for her, but don’t know how long that will be.

That’s all for right now, sorry I’m not sharing better news. We’ll have to see how it goes over the next few days…
love and blessings
Lucia

7/19/12 Later that day:
She’s doing well right now, some pain and nausea, but mostly doing well – (they’d removed the breathing tube within minutes of her arriving in the ICU) talking and eating and being herself, though irritable. She’ll be in ICU for another day or two, and not sure how long in the hospital, 3-5 days min from now…

(I had gone home to sleep that night, as she was doing so well, and her dad stayed at the hospital with her. I got a text in the morning that she was doing great and they were prepping her to be moved out of the ICU! I was making smoothie to bring her and some other food I thought she’d like, when I got another text that Elizabeth had become unresponsive and they’d rushed to her have an MRI and then emergency surgery. I arrived within minutes and she was in the operating room already.)
Friday, 7/20/12
Hi,
some of you got texts already, but Elizabeth had to have (emergency) surgery again this morning. Her brain was swelling, and she was unresponsive, though she’d just been talking and alert. They did a scan and found no bleeding, the surgeon needed to remove a piece of her skull to allow the brain not to be under so much pressure. She came through the 2 hour surgery well, though she’s still sedated, not awake yet. Surgeon just here, said it went well, but he won’t want to do surgery again for quite a while, as it seemed that it aggravated things (obviously).

That’s all i know right now.

Thanks for all your love and prayers and support. She’s always done things differently and no change now…she’s really strong and amazingly courageous. Will let you know how it’s going later in the day.
love,
Lucia

7/20 Friday evening
Hi all,
it’s 9pm and not much changed since this afternoon. Elizabeth is still not really conscious, and they’re giving her pain meds which are keeping her pretty sedated (a good thing!), but when they wear off she does get really agitated, which is a good sign, that she is responding. and then relaxes pretty quickly when they give pain meds again.

The surgeon said she still has a great deal of swelling in her brain, which they are trying to reduce with drugs, but that it could take a few days for it to decrease, and likely she won’t be too responsive with this much swelling. She is able to move her right hand and foot some, in response to requests, but not her left, which makes sense since most of the fluid is on the right side, which controls the left. She does try to open her eyes when they ask. She still has a breathing tube, which they say is quite uncomfortable, another reason to keep the pain meds going…they might remove it tomorrow, depending on how she’s doing – they want to be sure she can breathe well, plus clear her throat on her own, swallow, etc..

This has been the hardest day so far by a lot. It’s really hard to see Elizabeth in pain at all, not responsive, and her head is quite swollen now from the surgery, which apparently they expected yesterday, but it hadn’t happened…so she doesn’t look entirely like herself.

We also learned today that once she’s moving around, she’ll have to wear a helmet to protect her head whenever she’s not lying down, and this will be for 3-6 months, until they put the piece of her skull back (which is in the deep freeze)! You all can imagine how much she’s going to like this news – Greg suggested we try to find a Chanel helmet…(This seemed like it would just devastate her, even more than losing her hair, to be visibly so different in this way, it was hard to imagine her coping with this!)

They will wait to see how she’s doing before deciding if they’ll follow up with radiation or chemo first, as each has different side effects, and depending on her symptoms, they’ll decide. Hopefully she’ll be able to go home first, before she gets her next treatment and recover from the surgery.

Please keep the prayers, love, healing energy coming, as I know you are. It’s still not clear how the recovery will go from this surgery, though very likely she’ll have full capacity once the swelling comes down. And then she’s looking at some intensive treatment, again.

I’m exhausted, surprised I can write this much, but find it helps me to sort it out in a linear way, making some sense of all of this. It also connects me with all of you, which I really need right now. Thank you for being here. and there.

My mom, Greg, and Julianna are all here and wonderful to have them all. Greg or I have been by Elizabeth’s side every minute almost, and it is so good to be close to her.
love and blessings,
Lucia

Jul 20, 2012, Friday at 10:29 PM, Lucia Maya wrote (to a friend, S):

Having a hard time today being in gratitude! i know that’s not unexpected, but I’ve been able to be mostly til today. This just sucks. I see her either coming through this with magnificence of spirit, with just an amazing, inspiring story to tell – (she had just told our friend Celia that she wants to apprentice with her as a shamanic practitioner the day before the surgery), or deciding her soul is ready to go, but it doesn’t feel like that right now. She’s sure going for the intensity!
love,
Lucia

Saturday, 7/21/12
Hi all,
Better news this am: Elizabeth was able to respond to my questions with a nod or shake of her head! So exciting! They’re doing a trial to see how she does breathing on her own, and if that continues to look good, they’ll take out breathing tubes…she is breathing, but they want to see certain numbers (CO2 levels ok) before they go ahead. And she’s able to move her fingers and toes in response to requests too. Still harder on the left side, there’s still a lot of swelling. But definite improvement. Let’s hope she continues steadily in this direction…I did Reiki on her all night, so maybe that helped, along with all the meds!

Her right eye is swollen shut, she looks like a boxer who had a hard fight, and she is super strong!

She was just able to lift 2 fingers on her right hand when the doctor asked, so he was very happy…the swelling (in the brain) is decreasing. So glad to be sharing better news this am. really hoping there’s more soon.

Thanks for your prayers and love. it’s all helping.
love,
Lucia

June 13, 2013
“Your joy is sorrow unmasked…”
“Your joy is sorrow unmasked…

The deeper that sorrow carves into your being, the more joy you can contain.

When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.

When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” ~ Kahlil Gibran

This past week included the graduation of 4 young women I know from the University of Arizona, including my daughter Elizabeth’s best friend, who was also a creative writing major, and Elizabeth would have been graduating along with her, if she were alive. I attended her graduation with such pride and joy for her, an amazing and brilliant woman, grateful I could witness her commencement, and at the same time so deeply sad that Elizabeth was not there as well. In an amazing reading I had with a medium, (who contacts and shares messages from those in spirit) Elizabeth had communicated that she had “graduated” in the spirit world, and is completely joyful there. She even showed him herself with a diploma, which had been important to her, so that brought me some comfort.

On the heels of that tumbled Mother’s Day, my first without Elizabeth present. Again, it is filled with such a combination of emotion – gratitude for my daughter Julianna, whose 20th birthday it was that same day and sorrow that she was far away in New York; gratitude for being the mother forever to both of my inspiring, beautiful and amazing daughters, and to my own mother, for all the gifts I’ve received from her, including being born; and greater sorrow that Elizabeth will never again be with my on Mother’s Day, not in her physical form…

Elizabeth Blue and Lucia Maya ~ April, 2012

So I’ve been allowing this deep well of grief and mourning to bubble to the surface, and flow through. I’m aware that when I’m in it, I’m not clear enough to write, not clear enough to read through and select Elizabeth’s next pieces of writing that I so want to share here, and have to trust the process, trust the timing, not rushing or pushing, as much as I’d like to at times! This beautiful quote by Kahlil Gibran spoke to me and resonates deep in my being, and so I hope it speaks to you as well.
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May 15, 2013
June, 2012 – A New Challenge Met with Grace and Courage

For two and a half months, from March to the end of May, 2012 all was well. Elizabeth had completed chemo, and in April she and I were photographed together by a wonderful local artist, Jade Beall, who captured Elizabeth in her beauty, full of life, and the two of us expressing the love that we share. In late May, my younger daughter, Julianna, had come home from her freshman year at NYU for the summer, and it was a wonderful chance for the two girls to spend time together. It turned out to be extremely fortuitous that Julianna was home for the summer, though we would not know immediately just how important it would be.

Elizabeth and Julianna at The Cup Cafe, June 7, 2012

By the beginning of June however, Elizabeth started having headaches, sometimes accompanied by vomiting. At first we thought it was a stomach bug, and then it appeared to be a migraine. It truly didn’t occur to me that it might be something worse, as the PET scan had showed her completely free of cancer just 3 months earlier, and I had the impression that if she ever had a recurrence it would be years later, not months.

As her headache gradually grew much worse, she received massage, Reiki, craniosacral work, and acupuncture, but nothing could relieve the pain for long. On Friday evening, June 8, we went to an urgent care clinic, where they examined her and diagnosed her with “tension headaches” and gave her mild pain meds. She moved into my guest house that night, as she couldn’t keep much food down, and was in so much pain and so light sensitive, she couldn’t even look at the screen of her phone or computer. I knew it was bad when she asked me to read and respond to her friends’ texts! We were in touch with various doctors over the weekend, but all were assuming she had a migraine, (though she had no history of headaches), and trying to find a medication that would help.

Finally on June 12, Elizabeth’s doctor Ann Marie Chiasson, also a good friend, was in the neighborhood and stopped by to check on her. She recommended we go to the ER to rule out meningitis because of neck tenderness, and we drove to a small hospital half hour away, as we knew there’d be no waiting there. They did a CT scan and we learned very quickly that there was swelling and a large tumor in her brain, about 7 cm by 7 cm. They were concerned about seizure and stroke and prepared to transport her by ambulance to our local, larger, university-affiliated hospital, where she’d been treated before.

I was in shock. I remember sitting outside and sobbing, texting all our family and close friends, including my partner who had left a few days earlier to be in Hawaii for 2 months. For the first time in my life I called my mother and told her I needed her and asked if she’d come right away. She said she’d catch the first plane and be here in the morning. Something shifted in me then, letting go of the self that had been so independent, rarely asking for help, and knowing that that was no longer an option. I needed help. I needed the presence and support of my mom, and was so grateful she was able to come.

While I was outside, Elizabeth told our friend Ann Marie that she was just worried about me, worried if I would be ok. I think some part of her knew, in that moment, that she wasn’t going to live long. Perhaps she’d known on some level since her initial diagnosis, and it appears that her soul knew from a very young age – the one who wrote poetry seems to have known…I, however, have such an optimistic nature that it can border on denial, and I believed that she would overcome this recurrence of cancer fully and live a long life. I didn’t (wouldn’t) consider any other possibility and it felt disloyal, and like a betrayal of sorts, to think otherwise.

Once at UMC, (she posted photos of the inside of the ambulance while riding to the hospital), Elizabeth was brought to a room, first with a roommate and her mother, who talked nonstop, then for an MRI to get a better image of her brain, and was finally admitted to a private room on the oncology unit (thank goodness), both of us getting to sleep about 1 am. We were woken at 4 am by a neurosurgery resident telling us (with some excitement) that she would have brain surgery in a few hours to biopsy and diagnose the tumor. Exhausted and frightened, we managed to get a couple more hours of sleep. Elizabeth was still in pain, though finally with IV pain meds and steroids to reduce the swelling, it was less intense. At 6 am, an intern from the oncology team came in, examined Elizabeth and said it was unlikely she’d need a biopsy, as her lymphoma specialist seemed 99% certain it was a recurrence of the Non-Hodgkins B-cell lymphoma. I don’t remember much of her reaction, though she did ask one doctor her odds of surviving with the treatment they were discussing, and after hearing of one study with older men, who had about a 30% survival rate of 5 years, she was naturally very upset, talking of how little time 5 years was, and how could she do everything she wanted in such a short time! She wanted to become an English professor, get married and have children, write memoirs…I was also upset, but tried to convince her of the positive aspects, that this was only one study, with older people who may have had other health issues, and that since she was young and otherwise healthy, those numbers didn’t apply to her.

Later that day Elizabeth nearly passed out, after standing to wash her hands, and I could feel her energy waning. When I texted some friends to keep her in their prayers, I said she was “fading in and out”. It felt like she was deciding whether to leave then, and the doctors said later that it was amazing she didn’t have a stroke or a large seizure. She told me a couple of times that she did not want to live several years and be going through cancer treatment that whole time, only to die anyway. I told her she would not have to do that, and that was true.

She moved through these days of uncertainty, pain and difficult news with incredible grace, courage, beauty, love and humor. She was my badass, lovely, wise-beyond-her-years, 22 year old daughter. There is no one like her, and I miss her.

Elizabeth Blue, May, 2012

If you want to follow the process as it was unfolding in “real time”, here are the emails I sent family and close friends from the month of June, 2012:

6/13/12
Dear family and friends,

most of you already have heard that Elizabeth’s excruciating headache and vomiting of the last 2 weeks brought her to the ER yesterday. She’s now at UMC where she’s had a preliminary CT scan, MRI and right now a contrast CT scan, and it’s almost certain that the lymphoma is what’s been the cause of the pain. We’ll know more later today hopefully. There’s a possibility they’ll do a biopsy, but sounding more likely that they’ll get enough info from all these tests to determine with certainty what it is.

She’s finally on enough pain meds to get relief, and is in amazingly good spirits, with a great sense of humor and inspiring presence.

This is not what I expected or hoped to be writing today, as she was totally clear of cancer as of a couple of months ago, but this is what’s happening and I’m sure she will deal with it with the same grace, courage and perseverance that she has dealt with all this so far.

Thanks for all your support!

love,
Lucia

6/13/12
hi all,

looks like no surgery, they’re 99% sure it’s lymphoma that’s in a new place. they’ll do another (!) CT scan tomorrow of her whole body to be sure it’s nowhere else. and then start her on a chemo regimen, likelyweekly, getting the drugs into the spinal fluid or brain directly. And starting her on steroids daily too. A five month process. this is all preliminary.

love,
Lucia
6/14/12 to a friend
dear one,

Elizabeth is at UMC now, since Tuesday. They’ve found the lymphoma has spread to her brain. I still can’t believe I’m writing this. They’ve started treatment with steroids and will add the heavy hitters today or tomorrow. She’s getting another CT scan this am to be sure it’s not anywhere else. Please pray that it’s very limited or even already gone! She’s doing a bit better with less pain finally, but really drugged. My mom is here which meant I could go home and sleep some last night which was good.

E is in pretty good spirits when not in pain, with a sense of humor, amazing courage, good attitude and an incredible presence. She’s looking at another 5 months of chemo, likely every week this time.

Sending lots of love,
Lucia

6/14/12
Hi all,

a quick update – some good news today: Elizabeth is MUCH better today – she’s not in pain and no more nausea or vomiting! She looks like herself again, more color in her cheeks (she had none) and light in her eyes again. The steroids they started her on are working to shrink the tumor or at least the swelling. It’s amazing the difference and i want to thank all of you for sending so much love and healing energy to her, I know it’s helping!

The “tumor board” met this morning at the hospital and discussed her case, which is apparently a real blessing – all the best, most experienced folks from different departments weighing in and coming to a decision on the best treatment plan. So, assuming that the tumor is only in her brain (they just did an abdominal CT which was excellent – no sign of cancer in any of her organs) and will still do an MRI of her spine to be sure so we should know that by tonight), we have a plan. They will treat her with 2 chemo drugs, vincristine and methotrexate, plus ongoing steroids. The chemo will be given IV into a port they’ll insert in her arm. and will be done as an inpatient over about 2 days, over about 6 months. They said many people have an easier time with this protocol than the one she had been on, so that’s also good news. A longer journey with all this than we expected or hoped, but it feels very promising to me today.

love,
Lucia

6/16/12
Dear all,

yesterday was so crazy I didn’t have time to write. Plans (for how to administer chemo) kept changing all day, and finally Elizabeth received her first treatment late in the evening through her IV. There was little sleep last night, so she’s resting now, and thankfully Julianna, my mom and Victoria are all here for support, to keep her company and all the logistics.

The news from the spinal MRI is unclear – there may be some lymphoma cells there, but they could also just be some spots that are nothing. They are treating her the same in either case. She will likely be here at UMC til Monday, as they need to watch her kidney function closely after the treatment, although they’re doing lots of good things to protect them, they are just being cautious.

Elizabeth is amazing. She is beautifully navigating all this, with great questions for the medical staff, incredible strength and courage, wisdom beyond her years, and great patience. She’s finally feeling well enough though to be getting impatient about going home, which is a good sign! Getting rest here is practically impossible…

Thank you all for your love and support. I’ll try to keep you all updated, probably less frequently now.

love,
Lucia

Elizabeth preparing for first inpatient chemo, 6/15/12

Elizabeth and Lucia as she’s preparing for first inpatient chemo, 6/15/12

Elizabeth with her godmother, Victoria

Julianna, Elizabeth’s sister, by her bedside, 6/15/12

Elizabeth at the hospital, 6/15/12

6/17/12
dear M and D,(friends)

She is definitely in an amazing and incredible transformative process. I have to say I’m seeing miraculous shifts and I do believe she is here to do some really important things in this lifetime, and it feels like it will be a long one. I do hope I’m right!

thank you for your faith… all healing is welcome…

She should be coming home tomorrow, and then will have chemo every 2 weeks for 6 months…I am holding the vision that this will bring complete and perfect healing for her!

love,
Lucia

6/18 from a friend
Dearest Lucia,
With all my love and infinite blessings.
Elizabeth is very close to my heart!
Her radiance is incredible!
J. and I meditate together daily and always connect with her.
A situation like this is what brought me to my path… By totally lovingly trusting the radiance.
Opened all the inner doors the end of which I have not seen.

You convey so beautifully the essence of Elizabeth’s state. Your love and her greatness shine through!!!
What are her dreams?
Know I am with you in and out!
I am praying right now… That what she is carrying be released…
Love you dearly.
My heart is with you,
M.E.

6/18 (to friend and teacher M.E.)
She had a dream in the hospital, just as she was waking – you were there and telling her that her assignment for the day was to be kind to everyone who walked in her door that day, and so she was…

Another night she had a wonderful dream/vision i recorded…something about being two different versions of herself, and knowing that she wasn’t supposed to be there in that room. and finally saying maybe she could integrate the 2 different aspects of herself, as we talked about it at 4 am….

This does feel very ancestral, the day of her fist diagnosis (11/4/11) was my (paternal) grandparents wedding anniversary, and my mother and stepfather’s anniversary, and the date of this diagnosis (6/12/12) was her father’s and my anniversary! All the aspects of her family represented in the dates.

I’m headed to sleep, a very long day, but she’s home and I am too. happily.

love,
Lucia

6/19/12
Hi all,

so Elizabeth is home, doing well, though really tired. She had her follow up visit today with a bit more info: she will have another MRI before her next treatment most likely, scheduled for July 2 now, and if the swelling is down enough, the neurosurgeon will put a small “reservoir” in her head, where they can infuse the medicine directly into the tumor. This addresses the issue of the chemo not being able to fully penetrate the blood/brain barrier. Plus she’ll receive some other medicine through an IV of some sort, maybe a PICC line, maybe not.. They don’t know how many treatments since it will depend on how she/her body responds, at least 3 months, possibly longer.

Today her blood work was excellent, with great blood counts and Sandy (her NP at the cancer center) was very happy! She hopes this bodes well for going forward as well…So far the major issue is being tired, which could certainly be from lack of sleep and being in pain for so long… Elizabeth continues to have no pain, and is overall in great spirits. Trying to figure out what she can do, as far as work, school, etc… with lots of questions still.

I know this is a lot of detail, and soon I will not send these emails, but this seems the easiest way to communicate to this group what’s going on here. I so appreciate all prayers, love, support and words of encouragement from all of you!

I fully trust that Elizabeth will recover completely, whole and healthy. I hope you all hold her in that vision and see her completely well…

She continues to amaze me with her patience, courage, sweetness and thoughtfulness. More to come!!

much love,
Lucia

6/19/12 from a doctor friend
Lucia,

having experience w/ cancer patients thru residency, there is something special about them – there is something about cancer that i think burns away all the bullshit, and leaves people with who they really are. For most people – this is the crazy weird gift that cancer brings – they are better for having gone through the experience. the dross gets burned away, and all that is left is their real selves, their essence, their truth.

i knew this from doing cancer work before i even met you guys. and i cannot imagine how bright your daughter’s light will shine after she has been through this (again). it is not fair, and not right, but her gifts will come to so much fruition after passing through this fire. i believe that, i truly do. the core of her being is going to come through, and it is going to be amazing.

i love you.
R.

Jun 19, 2012 Lucia Maya wrote:
yes, doubt and uncertainty suck, as does cancer. I’m sad she has to go through this, and then I also know it is necessary and will be (another) amazing opportunity. She was so amazing during the last round…I get sad if i think about her gifts not getting “fully” expressed, and have to remember that however long we live, that is our full expression. Easier in theory!

loving you,
Lucia

6/27/12
Hi all,

things continue to move forward, not as fast as Elizabeth would like, but there’s progress… the latest MRI showed the tumor has already responded to the first treatment and the steroids, so that’s very good news. They are waiting until it’s a bit smaller though (hopefully before the 3rd treatment in 2 weeks), for the neurosurgeons to do their part, and insert an Omaya reservoir (sp?) in her head. This will allow one of the medicines (methotrexate) to be given directly into the tumor site, and will be even more effective, and also will affect the rest of her body less, which is good.

So this Monday, July 2, Elizabeth will be at UMC getting her 2nd chemo treatment of this phase. It involves about 24 hours of IV sodium bicarbonate to bring her urine to “basic”, ph of 7, and then the 2 medicines to treat the cancer, followed by another 24 or so hours of sodium bicarb and leucovorin (sp?), a “rescue drug” which will help to clear her body of these drugs. So probably 3 days in the hospital. They were planning to place a picc line to give one of the meds, but looks like it’s complicated due to her new vein structure (from the first tumor’s location), so some specialists will consult to see if there’s a solution, otherwise she’ll just get the medicine in her veins through an IV, as before.

She also had visits with 2 integrative oncologists this week, who both had recommendations for complementary treatments that will increase the benefits of the chemo and help alleviate some of the side effects. She’s really bothered by the spaciness from the anti-seizure med she’s on, and the steroids are making it hard to sleep, with a super busy mind, plus other mood issues, so hopefully these new things will help!

Having my mom and Victoria here was wonderful, and then Greg (Elizabeth’s father who lives in California) was here until yesterday, which was great too. Elizabeth has a friend from Seattle coming tomorrow for a few days, and it’s important for her to have support and company most of the time. It looks like Tashe (my sister) and my mom will come out and stay for a week each while I go to work in Hawaii with Zelie, end of July and early August, which is a huge relief to me that they’ll be here with Elizabeth, and Julianna too.

Overall staying positive and optimistic, and some days are easier than others. I am seeing Elizabeth completely healed and well, and living a long and fulfilling life! I so appreciate all your love and support and prayers! We are very grateful.

love,
Lucia

JULY, 2012 will be coming up soon…and next will be some of Elizabeth’s writings from this time. Thank you for reading and joining me on this journey.

April 5, 2013

Tag: Parenting

Some Days with Elizabeth

Assumptions: things that are accepted as true or as certain to happen, without proof

Daily emails from Elizbeth’s admission to the hospital through 2 brain surgeries…

July, 2012 from Lucia to family and close friends:

Your message has been sent

If you want to follow the process as it was unfolding in “real time”, here are the emails I sent family and close friends from the month of June, 2012: