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 on her expedition outside, 8/2012Elizabeth with Julianna and Greg, 8/2012Elizabeth 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.
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.
I am honored to be nominated for my first blogging award: The Versatile Blogger Award (which apparently also means I’ve received the award, I wasn’t sure at first if there was to be a vote, or what happened next…) I am grateful to Tia at Life: Everyone Has One for the award, and encourage you to go check out her blog.
I’m grateful, but also have to say I’m not sure how versatile I really am, here, at least. This blog is singularly devoted to this particular journey I’ve shared with my older daughter in her last year of life, along with her writing. In the rest of my life I’d say I’m versatile, but here I feel I’m much more focused than I am elsewhere, and I like having one place in my life where that is true. So on to “the rules”…
Here are the rules for those of you I have nominated (which means you’re receiving the award!):
1: Display the award on your page.
2: Announce the win with a post, and link it back to your nominator as a Thank You!
3: Present 15 awards to those of your choosing.
Here are 15 blogs that I love, some related to the topic of loss and grief, and some that are simply wonderful writing. An eclectic mix:
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 BlueElizabeth 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.
For where but in self-expression do we find the liberation that is the dance of the soul?”
by Elizabeth Claire Kurland Meagher (aka Elizabeth Blue)
A Lifetime
I want,
To quote Rumi.
I want to say one thousand words of thanks.
I want
To throw
One million rose petals in the air.
I want
To kiss the sky.
I want God to know that I am grateful
I want to be humbled by the sheer knowledge of what is.
I want to blow into one million pieces, and dedicate myself to the world.
I want to say thank you,
And mean it.
I want to tell the world,
The universe,
That my Indian lover is
The sky
The moon
And the sea.
I want you to know that beauty is everlasting,
And that I am only a temporary placement of outer beauty.
I want you to know that the beauty inside me is everlasting.
And I want you to know that I did not create this.
And,
I created some.
I want you to know that eternity is forever, and then more.
I want you to know that ‘me’ is just a figure of speech.
I want you to know that I love you.
And that life,
Today,
Was one of those days worth living.
Today I was planning to share something else entirely, but I believe my daughter Elizabeth’s spirit guided me to find this. It is from a collection of writing from her freshman year of high school, 2004-2005. This poem was written when she was 14 or 15. It feels to me that she has received everything her soul desired here…
In her introduction, she has this to say: “A quick note on poetry: I would like to say that I can hardly take any credit. It is my hand that writes the words, but it is something else that comes through me to deliver these expressions and words to you.”
A new awareness as i sit at the airport waiting for my flight to visit my daughter Julianna in New York: for years I asked the divine over and over how I could serve to the greatest degree possible, and this is what I’ve been given. Framing it in this way, that Elizabeth’s death can push me into greater service to others and to the divine, helps me and keeps me moving forward and inspired, feeling more grateful and hopeful. It’s helping me to shift back into a place of trust that all is unfolding as it is meant to.
I don’t know yet what this might look like in the future, but for now I’ll continue doing what I know to do each day, being with family, working with clients and writing as I can…
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.
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, 6/15/12Elizabeth and Lucia as she’s preparing for first inpatient chemo, 6/15/12Elizabeth with her godmother, VictoriaJulianna, Elizabeth’s sister, by her bedside, 6/15/12Elizabeth 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.
Luminous Blue 