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.
Early August, 2012: Emails and other writings from Lucia Maya
These are emails I wrote from the second week after my 22 year old daughter, Elizabeth Blue, came home from the hospital under hospice care last summer. She arrived at my house and we quickly settled into a routine of caring for her physically in this new state. Emotionally adjusting to this unexpected new paradigm, appearing to be the end of her life, was a bit more of a challenge. In a very short time, Elizabeth had moved into the most beautiful state of love, acceptance, peace and grace – true enlightenment, that I have ever witnessed. This guided the rest of us and we followed her lead…
August 5, 2012: a group email Hi all,
I’ve not been writing because there’s not much to say – it’s very quiet here. But I can understand you all might want a window in to what the days are like…
Elizabeth is sleeping much of the time, on a bed set up in the living room, with flowers all around, a lovely altar that she can see at the foot of the bed, essential oils diffusing much of the time. She has been massaged several times a day by my sister Tashe, who left yesterday, and is hugely missed by me and the rest of the family! Elizabeth doesn’t seem to notice when people come or go, and has no sense of time it appears… I am doing some massage as well, keeping her limbs moving and loving her with touch. Elizabeth is not able to use much of her body, mainly just her right hand, and she can speak and smile, though still mostly a whisper, from having had the breathing tube in so long, but last night she did start to speak a bit louder and it was lovely to hear her voice! When I told her that, she said, “I bet.” Hard to tell when she’s being funny, but it seems she doesn’t get jokes now, or perhaps I’m not getting hers – yesterday i kissed her and said “i want to bite you”, meaning she was so yummy i wanted to eat her up, and she replied, with no expression, “please don’t”. When I asked her later if she preferred being shifted to her back or her other side, she asked, “what other side?” It seems she has little sense of the body at this point. She’s said no every time we’ve asked her if she is having any pain, but this morning said yes, and when i asked her where, and named several possibilities, she couldn’t say where. I gave her some pain meds and she’s been sleeping mostly since then.
She eats usually one small meal each day, declining most food that’s offered throughout the day, and drinking some. Usually she has some fruit, and something like a tamale, last night she said yes to a veggie burger with guacamole, but then only ate a couple of bites. It seems she’s eating less each day, but then she surprises us and eats a lot one day. She’s taking almost no medication, other than continuing on the anti-seizure med, now an antibiotic because she got a UTI, and something to help her sleep at night, though she may not need that still now that she’s off the steroids which were keeping her awake.
Her friend Ava came down from Seattle for a visit this week, and today her oldest friend Brieana is here from California, and she has seemed to enjoy them, mostly listening but talking with them some too. My dad and my step mother, Alexandra, my brother David, have all been here this week too, and her dad Greg is here again for a long weekend, and plans to continue that schedule for now. My mom is staying and it’s really wonderful to have her presence and her help. Zelie (my partner who’d been away since Elizabeth’s recurrence of lymphoma, mid-June) came home on Wednesday and it’s been wonderful to have her home. Victoria (my close friend and Elizabeth’s godmother) arrives tomorrow for most of the week, and that will be wonderful I’m sure too.
Elizabeth has said a couple of times this week that her mind is quiet, and yesterday when I asked what is going on inside, she said “nothing, and a lot”. She had one night with a lot of anxiety, and she and I talked more about death, fear of the unknown, her fear of disappointing people (especially her grandmother, who she’s been quite close to), and we’ve each been making it as clear as we can how much we love her and will miss her, and that we will be ok when she goes, that we want her to leave whenever she’s ready, and we will be fine with her timing, and that she’s not disappointing us, that we are incredibly proud of her and everything about her. Then Zelie, Tashe and I all did Reiki on her for quite a while, and she’s seemed more at peace since then.
It’s a very strange and interesting time, as I am deeply sad, and in acceptance, and possibly some denial too, as it feels like the Elizabeth I’ve always known is already gone, and I love this one in front of me as well, but I’m grieving and loving her at the same time…and numb some of the time too, as I seem to run out of emotion after some time.
Thank you all for your continued prayers, love and support.
love,
Lucia
August 8, 2012 Some friends who do energy healing and can “see” into the body as well as angels and guides came to do some work on Elizabeth. This was my reply about how she was doing after the visit:
She is good, very quiet, more inward, wanting time alone, which is rare for her. She seems more at peace, and it feels like what transpired yesterday, first felt like a move towards “recovery”, and now feels more like a move towards some resolution, clearing, and bringing all of us gathered into more peace and center…we’ll see what each day brings.
love, Lucia
Our friend’s experience of working with Elizabeth:
“the energy was incredible! I grounded while there but it was a surprise to see Elizabeth’s guardian angel actually materialize. At that exact time, she smiled really big and seemed to relax…I saw you and Elizabeth connect on a level not often seen, it was so deep.
Elizabeth felt at peace as soon as the guardian angel descended and spread her wings. That’s about the same time M. told her she could change her mind if she wanted. I think her guardian angel was telling her the same, but there seemed to be a profound energy change in the room.”
August 9, 2012: to a friend:
Elizabeth’s cat, Blue, can come in and visit her from the guest house where he’s living now with my mom, who loves him. Interestingly (and very surprisingly), Elizabeth’s not very interested in him and none of the animals are showing interest in her, which is really different than in the past. She’s always been an animal person, more connected with them than with most humans, and they always love her…so clearly there’s been a big shift (in her energy and her identity), partly I think they don’t recognize her, even her own beloved Blue.
August 12, 2012: about a home funeral
We had learned about the possibility of a home funeral: being able to take care of Elizabeth’s body at home, with the guidance and support of a wonderful woman in Tucson, Kristine Bentz of Sweetgrass Ceremonies. She came to listen and share information with our whole family who gathered in circle with her. It was incredibly helpful to have her support during this time and later. This was Kristine’s email after the meeting:
“I left awash in goosebumps today. Despite the heat. Thank you for being so courageous and sitting in a circle to open the conversation we shared. I do not pretend to know what you feel in your journey with Elizabeth. I can only offer this: I felt love overflowing your home and her being. She is surrounded in beauty. She is magnificent. Your caregiving circle is so strong…I am willing to walk beside you on this continuum, support you and be a resource whenever the need arises.”
August 10, 2012: from Lucia’s journal We are being given permission to be intimate with Elizabeth and with one another in a way that’s not ordinarily possible.
Elizabeth In Enlightenment – she is being completely present, no thought or cares of the past or the future. No ego, no artifice, no irritation or anger, only calm presence, with loving and compassionate smiles.
August 12, 2012: a group email
Dear Ones,
the days flow seamlessly into one another, and time no longer seems to exist in this world we are inhabiting. I have no idea when I last wrote, or what was said, so I’ll try to give a sense of what is true now.
Elizabeth continues to be in a beautiful state, gracing us with her sweet presence. She speaks little still, and makes her needs known, mainly by all of us guessing and intuiting, then asking her for confirmation. She expresses no desires, no complaints, no irritation or boredom, though she will have an opinion if we offer her choices of what to eat, or which shirt to wear, etc. She seems content, and smiles are her main expression. She is loving and patient with us all, accepting of our desire to please her. Gives us long thumbs-up when we’ve put her in a new position and ask if she’s comfortable, with a smile:
Elizabeth giving us a thumbs-up
These last few days we’ve had Greg, her dad, here, and Victoria, her godmother, and there’s been a really sweet bedtime ritual of hands-on pouring love into her, with all of us gathered. Zelie (my partner) has sung her a lullaby and she has fallen asleep this way some nights. It feels like such a gift she is offering us all, this time together, and with her. Here we are finishing up (missing Julianna (her sister, my younger daughter), who’s been a part of all of this too):
Lovely family bedtime ritual
Elizabeth’s appetite has increased, so she’s eating well, several small (sometimes large) meals a day, (I’m sure helped by the wonderful food provided by Victoria, and last night Greg made Elizabeth’s favorite of bruschetta!), drinking plenty of water, tea and juice, and still appears to be losing weight. We’ve all been eating dinner together sitting with her, as she says yes when we ask if she wants that now. She has been on minimal medication, a couple days this week she had some pain, but mainly in her hip, which has gotten tweaked from positioning perhaps, though we’re being careful as can be as we turn her and try to find the most comfortable positions. Just ibuprofen and tylenol is all she’s needed, and several of us are doing energy work on her as well. This just changed today, as she’s been having pain in her neck (where we believe the cancer had spread), a wound on her leg that’s slow to heal, and her hip, so she’s needed more pain meds today than in the last week combined. Every day is different, and we all try to stay in the flow, in the moment.
Some of us sense that while Elizabeth is still here, she is also connecting with other worlds, other realities, weaving a web of love that will help to carry her into this transition and beyond, that will help us stay connected with her in spirit once she leaves her body. Here is a beautiful image, with a lovely golden heart on her brow, that was visible in all the photos, though not to my eyes. She has rose petals on her arm, and a beautiful crystal on her heart. She’s been holding that crystal most of the time since it was gifted to her:
Elizabeth Blue with rose petals and a golden heart
She is very sensitive (as always, but intensified) to those around her, the moods, energies, etc. This morning I’ve had the luxury of sitting alone with her, and put on Constance Demby’s Sacred Space music (Elizabeth most often says yes to music – Ashanna’s crystal bowls, Beyonce, Mozart, mostly soft relaxing music, though sometimes rap) and went into heart meditation, and she joined in and fell deep asleep, even now the doorbell just rang and didn’t disturb her…She is mostly accepting of whoever and whatever is being presented, and seems to adapt her process accordingly.
I’d been giving her some homeopathic remedies that had been recommended, and she took them willingly, but yesterday I had the sense that she really didn’t want or need to be taking them, and when I asked her, she said no, she didn’t want to take them. I sensed, and asked, “you want to keep it simple?” and she nodded. That feels like the main message I’m getting – keep it simple, tuning in, being present with her when we’re with her, accepting what she has to offer, to the best of our abilities…
Yesterday was the deepest peace I’ve felt in a while, even on my walk with our dog Tilly in the neighborhood, which is when my sadness usually emerges – seeing the college students moving back in, preparing to start the semester, and listening to my internal story of how Elizabeth won’t be among them. But yesterday there was an ability to stay present with the peace I feel when I’m with her, in each moment, and carry that with me out into the outside world. I am grateful for that, and for each minute of each day that I am able to spend here with her.
sending much love and the hope that you can all feel Elizabeth’s love and presence from here,
A short and heart-wrenching piece written by my daughter Elizabeth Blue, while she was in the middle of her first round of chemo treatment for non-Hodgkins lymphoma, which ended her life on September 23, 2012.This was written 4 days after her 22nd birthday.
Motherhood
Monday January 16, 2012 7:57 PM
I just burst into tears. I was looking at a friends new baby and wedding pictures and I was getting teary eyed at them. I got up, closed the computer and went to use the bathroom. When I came out I thought about my daughter and the people I would want there during my labor and her birth. I thought about Victoria coaching me through labor and pain and telling me about her experiences and I burst into tears. Truly uncontrollable sobs. I’m still crying. I thought about how I might never have that and I could barely stand it. Something just months ago I thought I would never want, I want. I want so badly, so much, to be a mom. I want so much to meet my daughter Chloe Cricket Benjamin Blue. I imagined her having the same birthday as me or the day before and how it would be the best birthday present god or life or anyone could give. I want to meet her. My daughter: Chloe Cricket Benjamin Blue. I want so much to know her – the thought of not knowing her brings tears to my eyes and I can’t stop crying and sobbing and wailing knowing that it is possible it may never happen. I miss her and I didn’t even meet her yet. I tried to reason the tears away wondering if I’m hormonal or had too much coffee or am hungry. But none of these things were true and even if they were it doesn’t matter. I just want to meet her I just want to know her. I want to be born a mom, anew and born with her into a new life: the clan of motherhood.
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.
The amazing photographer, Jade Beall, took hundreds of beautiful photographs of my daughter Elizabeth Blue, in April of 2012, during the luminous time when Elizabeth had finished chemo and before the cancer returned in her brain. Jade wrote a blog post today about her experience of photographing Elizabeth Blue, with photos I haven’t shared yet (I plan to share many more over time) and I am delighted to share it here!
Jade is devoted to sharing beauty, with an incredible eye and vision and a huge heart, she inspires many.
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’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 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
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.
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
EARLY JULY
As I share these emails, from early July of 2012, I realize this is the last period of time when we were living an “ordinary” life. Granted, my definition of “ordinary” had shifted, given that Elizabeth, my 22-year-old daughter, had already been through one course of chemo for lymphoma and was in remission within five months of her diagnosis; that the cancer had recurred in her brain and her spine only two and half months later; that we were now hoping for the tumor and surrounding swelling to have shrunk enough for a neurosurgeon to implant a reservoir in her head that could deliver the chemo drugs more directly to the tumor; and that Elizabeth was now moving in with me, for a 40 day Healing Intensive so that I could help support and care for her, and so we could together use all the tools we could find or imagine, to invite and facilitate a miracle.
Elizabeth June, 2012
These emails are from the last time that Elizabeth was still the daughter I’d known for 22 years, with much of her strong personality intact. Extremely articulate, a deep thinker with incredible wisdom and confident in many ways. She was beautiful and vain, taking at least an hour to prepare for going out, trying on as many outfits as it took to find just the perfect look for that next event – something she’d been doing since she was 2 years old, along with changing many times every day. She loved clothes and her appearance was one of her great forms of artistic expression, always unique, getting away with wearing things that would have looked odd on most anyone else, but lovely and daring on her. She was also insecure in certain areas, afraid her friends would forget her if she wasn’t able to be present in all her usual ways – hanging out with Samantha and “the boys”, going out dancing and to shows, working as a barista and at a piercing apprenticeship, going to yoga.
She was scared, aware of the challenges she was facing, yet mostly calm. She was willing to take unpleasant-tasting powders and supplements 3 times a day, without complaint, prescribed by the oncology naturopath, use hypnotherapy, guided imagery, and try a “medicinal” raw food diet with very limited foods. She and I had twice-daily “check-ins”, to share and discuss anything that was coming up for us emotionally, and she wouldn’t miss them, even when she was exhausted and dizzy with side effects from the steroids and anti-seizure meds she was on.
She prepared for her second and third rounds of in-patient chemo like the divine warrior she was, making conscious choices to bring a semblance of control wherever she could, creating sacred space in the hospital room, with our own decorations, clothing, food, altars, art supplies and books.
If you are following our journey of last year, these emails are detailed summaries of what our days were like as we moved into a greater awareness of the preciousness of life, and the precarious time we were approaching.
Emails from me to family and friends:
7/1/12
Dear Ones,
tomorrow (Monday) Elizabeth goes to UMC to receive her 2nd chemo and is expecting to be there til Wednesday, though it could be Thursday, knowing how things run there. She feels well prepared, in all ways. This is the first time she’s getting to pack and bring what she wants with her, rather than coming in with an emergency…
We have a plan in place that I feel excited about – Elizabeth will move in here after getting out of the hospital, for a 40 day healing intensive with me. It will mean eating whole foods, (which soon changed to all raw foods), getting plenty of time together, working with whatever comes up, physically and emotionally, and doing all the treatments already planned, chemo, supplements, other meds, etc..
It does mean I will not go to the Hawaii Retreat as planned (an annual 6 day workshop my partner and I offer, with participants already registered), and Zelie has lovingly and generously offered to do that on her own. It feels important for me to be here with Elizabeth for this time.
love, Lucia
On Jul 2, 2012, at 8:04 AM, Elizabeth Blue wrote, to the Nurse Practitioner in charge of her care at the Cancer Center:
Hello Sandy, Hope you are well. I wanted to check in about my admission to UMC today (7.2.12). You had said I would be contacted when they have a bed for me but I don’t know exactly who will be contacting me (You? Someone from the Cancer Center? Someone from UMC?) Any idea when I might hear from them? And is there is a point when I should contact them someone if I haven’t heard anything? (And who would that person be, how do I reach them etc.?) Sorry for all the questions, first planned admission seems a bit mysterious. Thank you for your help -Elizabeth Meagher
On Mon, Jul 2, 2012 at 9:11 AM, Lucia Maya wrote:
great email sweets. we just wait now…I’m ready, will just put the stuff from the fridge into the cooler, so i can be ready in 5-10 minutes at any point…
feels like when waiting for a baby to come… get packed and ready and then wait. Not quite as exciting of course. But each treatment I see as a new birth, moving you into your new self, your new life…
love,
Mom Wonderful, I am pretty much ready too, just preparing the last few things.. Reminds me of waiting for a baby to come too ( : See you soon. Love (E)
Elizabeth Blue with her GrandmaElizabeth Blue at home July 1, 2012Elizabeth and Kathleen sharing some delicious raw food
7/4/12
Hi all,
I’m now realizing Elizabeth has been here in the hospital a few days and I haven’t emailed, because things are going really well…She received chemo the first day, Monday, as her pH level was at 7 when she arrived, which is great. That’s the alkaline level needed for the body to be able to process the chemo safely. She’s also been eating foods that promote slight alkalinity in the body, as there’s some evidence that helps to create an environment that is inhospitable to cancer as well.
So it still took several hours to get started, but she received the chemo in full by Monday evening, and since then has continued to feel well. Once her levels come down a bit more, they’ll take her off the IV and stop the rescue drug that helps the body clear the chemo, so they check again tonight at 48 hours. Assuming that number is good, they check again tomorrow am, and then she can go home. (In order to cross the blood/brain barrier, which protects the brain from being damaged by any toxins entering the body, they had to give her super high doses of the chemo drugs in the hope that they would be so high that they would push through that barrier, and then they needed to clear quickly so they wouldn’t cause damage to the rest of her organs.)
She’s in good spirits, the room looks beautiful as we brought in photos, scarves and favorite items to create her own space. Everyone who walks in loves it! And of course it smells good, because I brought essential oil sprays too…Elizabeth is eating well, slept well one night, not well last night, but still in good spirits this morning. The nurses have been wonderful each shift, really loving and sweet, and the doctor this time also lovely. She’s in great hands.
Also, they are still trying to get a line placed to be able to give future chemo treatment (for one of the meds) and blood draws that way. There’s been lots of discussion, as the veins in her chest have changed due to the location of her first tumor so they can’t place a regular port or PICC line to have ongoing access to her veins . So they’re looking at the possibility of a port in her leg, which sounds like the best option, maybe the only one right now…It’s frustrating because it’s slow, and she’d like some answers, but they are working hard at getting it resolved. No discussion this visit about the reservoir, as they’re waiting for the tumor to be slightly smaller before they can place it. Hopefully before the next treatment, we’ll have to wait and see…
That’s it for now!
love you all, Lucia
Elizabeth Blue in her hospital room with our decorationsAltar in the hospital roomLucia Maya with Elizabeth Blue, while she’s receiving her 2nd chemoElizabeth Blue, self-portrait in the hospitalElizabeth Blue’s beloved companion, Blue
7/5/12 from Elizabeth to her Integrative Oncology MD: Hello Marnie,
I was just wondering if you have received any more information regarding whether or not it is safe for me to try taking the medication you prescribed me for sleep with the anti-seizure medicine I am on. I have tried taking both the Lorazepam and Clonazepam for sleep (not at the same time mind you) and while the Clonazepam helps a bit it is still not really doing the job. I have not taken the Trazodone yet as I wanted to confirm with you first that this is safe. But with the steroids I am taking as well, sleep has continued to be difficult to impossible and I am becoming increasingly concerned. I am also open to alternative sleep suggestions from natural ones to sleep aids such as Ambien (which they have tried in the hospital and sometimes works). Just getting quite desperate…
I have just finished my second treatment and am being discharged from UMC today which is very exciting. More news to come on how I am responding.
Also: my mom and I have decided to embark on a 40 day (at least) long process of eating lots of raw, whole, home prepared, foods in the hopes of assisting the chemo treatment. I am also very interested in trying a tea called Essiac (been used as an anti-cancer tea since the 1920s), which has been recommended to us by various healers and friends. We are curious if you have any knowledge of this tea and or any opinion on its value, potential or possible negative side effects. Any info or opinions are very welcome and appreciated.
Thank you so much and best to you, – Elizabeth
7/5/12 – To a friend:
I have moments when it appears that “this shouldn’t be happening!”, but mostly once I feel that, it shifts to “truly this is meant to be” and there are amazing gifts coming out of this, MANY still to be revealed…
Headed out of UMC today, yay! All went extremely well. Just super tired, last night was almost no sleep and I do not do well with little sleep! but can’t seem to nap either…
Home now.. Elizabeth rested and went to her house to pack, then we’ll go and help load up some stuff… she’s bringing her cat, and hopefully not too much stuff. I’m having a minor meltdown, internally, at least. She moved out in anger at 17, so it feels right that she’s moving back in for these 40 days, doing it consciously, and then leaving in a different way, consciously and deliberately. It brings up all kinds of fear though, that she won’t leave, that she won’t want to, that she’ll be “too sick”, etc..
I feel like so much is unknown in our situation, and yours too, and the tension is the really challenging part!
love you mucho,
Lucia
7/11/12
Hi all,
quick overview update:
Elizabeth is now scheduled Thursday am for a port, to be placed in her leg vein, (an access site under the skin to a vein, where they can infuse medicine, plus do blood draws, which will make life in the hospital so much easier!) which could take all day, and Saturday afternoon she has an MRI, outpatient. They will see if the tumor has shrunk enough yet for the cranial reservoir to be placed before this next treatment starting Monday.
Saw Sandy (main oncology NP) with E yesterday – she said there was “enormous progress” just from the first treatment, seen in the first MRI, so that was a huge boost, and good news. Her blood work yesterday looked great too. Her white count was normal, and her liver is doing well with the treatment.
Kathleen (our dear friend) drove out for 3 days from Colorado and was immensely helpful – with food prep and teaching, listening, hypnotherapy, playing harp every morning – so many gifts! I told her it felt like our fairy godmother was arriving. I am amazed how much support Elizabeth, and I, have here.
Julianna (Elizabeth’s 19-year-old sister, home from college for the summer) is wonderful, always sweet and helpful, doing food shopping, helping with everything, including her wonderful presence of love.
There’s so much to do every day, we still haven’t got E fully moved in here, there’s laundry, food prep, medical appointments almost every day! Elizabeth is amazing, moving through all these appointments, making healthy food, sitting and talking with me when there’s a lot of emotion to process, working hard at getting sleep (the steroids make that difficult, but working with a variety of things to help, she’s getting maybe 7 hours now, better than the 3-4 she was getting), getting a bit of time with her best friend still, and trying to care for herself body, mind and spirit – it’s a full-time job and she’s doing it with much grace and beauty. Lots of healing happening, of all kinds!
The last time at UMC, the preparation was essential to having a positive experience. We packed food, beautiful things for the room, clothes she likes, etc…and it all takes time, though some is still packed and ready. Getting ready for Monday at UMC, my mom is coming tomorrow night to help, and Tashe (my sister) the end of the month – yay!
love to you all,
Lucia
7/11 to my mother, arriving for a visit soon:
Hi Mom,
now I’m having doubts about going to the class Sunday (a raw food class, as we’d now moved into a full-on raw food diet, which we planned to continue even at the hospital)… There’s so much to do every day, Elizabeth was overwhelmed by your simple request for measurements at her apartment (they were going to install some shelving), and is easily stressed to the point of tears. It’s good actually that she’s crying, because that’s been hard for her in the past, and I think an essential part of the healing process.
I talked with Lisa (my pediatrician cousin, as her father and I were starting to explore the possibility of getting a second opinion about Elizabeth’s treatment options) last night, which was good, but put me into overwhelm with possibilities of other options, UCLA pediatric oncologists, etc.
I’m glad you’re coming! and i want to ask that you be as soft as you know how… E’s moving really slowly, and very frustrated by this (though at times seems normal and quick and then gets tired and slows waaay down). It’s hard to watch, and I’m working on patience myself. Really having to move at a different pace…
E’s worried that she won’t be able to do all you, and she, want to do, won’t be able to please you, etc…so gentleness, slowness and patience are all called for now. Thank you for listening to all this!
Luminous Blue 