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.
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.
December 7, 2011 I guess I could try and say a bunch of cliche and profound things about having cancer. “I’m lucky to be here.” “I shouldn’t be here” “I’m fighting for my life.”
That one really gets me: I’m fighting for my life. The thing is, it doesn’t feel like fighting, it feels like an inconvenience. Yes, I’ve got this huge tumor the size of my fist right near my heart and I’m 21 years old and this shouldn’t be happening at my age, with my overall health, etc. etc. This shouldn’t be happening.
But the thing is also, I don’t believe in that: This shouldn’t be happening. I’ve always felt the absurdity of anything occurring because it is so unlikely. The odds for any incident occurring are miniscule (if you consider how unlikely it is that any of us be born. The right sperm meets the right egg not to mention the unlikelihood of your parents meeting in the first place, etc.) The world is filled with improbability. I’ve always seen it that way. And so it is not entirely shocking to me, the randomness of having cancer at age 21. It’s not fighting. I mean, maybe it is but I feel like I just lay there in a barcalounger and take a benadryl-induced nap while they pump me with chemicals that will hopefully make the tumor go away. (They think it will, they think its working.) Fighting is active. What I’m doing feels passive. I am letting them do things to my body to combat something my body and my soul have manifested that overall I will benefit from (experience wise) but all I have to do is lay there and let it happen to me. I am not cutting the tumor out of my body with a knife. I am not inventing new chemicals to destroy cancer cells. I am not fighting cancer. I’m letting them fight what my body has created that is not in its best interests in terms of survival. Fighting just doesn’t seem like the right word.
There are moments of vulnerability where I break down and feel the simple sadness of the diagnosis. Of the situation. Like when Victoria, my goddessmother, sent me a package and in it was this ring. It had a gold clover on it and I realized it was for luck. I put it on the ring finger of my left hand and squeezed my fingers together as tight as I could because I realized for the first time in my young life I needed luck in a life or death sort of way. Not a ‘luck to pass my finals’ sort of way, but a ‘luck to survive’ sort of way. I needed luck to survive. That was a blow. That concept struck me and made me sad.
What else: When I left the cancer center after my second chemo treatment my mom told me a story: There were two older people sitting next to me in the barcaloungers, getting chemo. (Well one of them was, the other was there for support). I always try and be cheerful when I go in to get chemo, even though I know I’ll feel like shit in a couple hours, when it starts I feel fine and everyone takes it so seriously. As if being serious will make them more likely to survive or something. I guess they are just scared. I try and be all smiles and long sexy hair flips of my gorgeous brown wig (the best thick brown real human hair China can export and New York can sell). I wear sexy yet respectful outfits, comfortable since I’ll be napping. I do my makeup the way I always do, with liquid black eyeliner, and soft lips. I try and look pretty for the nurses to prove to them I don’t always look as shitty and swollen to a crazy degree (the way I did when I came in the first time and the tumor was blocking the blood and fluid in my head and neck from leaving and I looked like I gained 50 pounds all in my face). I try and look pretty for the nurses. Especially my favorite, Else, who is from the Netherlands and pricks my veins no problem even though they are slippery, and speaks in her soft accented perfect English without hesitation or doubt that she knows what she is doing. Sometimes I love her, my angel mother.
I try and look pretty for the nurses and cheerful to make their jobs a little easier/better. I try and smile at the other patients and give them disapproving looks when they complain or smell bad or are rude to the nurses. I really shouldn’t. I should learn to be more compassionate.
When I walk around the cancer center I wear high heels so I can hear my feet clacking on the tile floors so I know I exist. So I know I don’t shuffle like an old person with soft shoes and a cane/walker. I keep my head up the way Maya Angelou told me to and I’m not particularly nice to anyone. By not particularly nice to anyone I mean I’m the way I always am. Professional, efficient, kind but distanced. I treat people formally and with smiles when they are helpful and harsh eyebrows when they are not.
Anyway, my mom told me this story: When I was getting chemo for the second time and I got up to use the bathroom the old woman next to me told my mom “She’s too young, she’s too young to be here.” My mom, wise woman that she is, responded: “everyone is, everyone is too young to be here.” But the old woman’s eyes welled up with tears and she said “yes, but she is especially too young.”
When my mom told me that it made me cry because yes, I am too young. But at least I have my beauty and my youth and a future to realize to help me make it through. I don’t know if it would be better to be old. That was the other moment.
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.
There have been 2 dates this past week that have felt quite significant. It was one year ago, on March 21, 2012, the first day of spring, that Elizabeth had what we had every reason to believe was the last of her 6 chemo treatments for lymphoma. It was a day of celebration – of moving out of the long, dark winter of chemo, and into the rebirth and new life of spring. In the months that followed, she was reborn, telling people of her journey with cancer, writing about it on her blog, going without her wig once her hair had grown in just a half-inch (“I know there is a part of me that knows bald can be beautiful.“), returning to yoga, getting a new job, dating a new man, a body-piercing internship (“I got a Piercing Internship today. I start Sunday. I’m so excited, I think I was born to poke tiny holes in people and then tell them how to heal them correctly.” June 1 2012), being photographed not just bald, but bald and naked…
Elizabeth Blue, 4/13/12Elizabeth Blue, 4/13/12Elizabeth Blue, 4/13/12
It’s still beyond my comprehension that almost exactly 6 months later, on September 23, 2012, Elizabeth died peacefully at home, having known for 3 months that the cancer had recurred in her brain, and knowing for 2 months that there was no more treatment, and that she would almost certainly die before winter arrived again.
Just past the 6 month anniversary of her death, I’ve been surprised at how the experience of grief has gotten both easier and at times, more intense. What is fascinating is how grief is alive, a kind of entity, with its own timing and its own movement, separate from me, yet weaving itself into my life. Showing up some mornings, and taking a vacation, perhaps, on the other days. Visiting elsewhere possibly? Perhaps I am sharing this particular grief with someone else, and it can’t be in two bodies at once? It does visit less, but when it comes it is much more powerful Some days I think of Elizabeth and feel simply joy and gratitude, peace. I feel at a distance from “the story” and from grief. And there are the days when everything I see, hear, eat, wear, etc, makes me think of her and the loss of her physical presence with such intense emotion, such depth of sadness…it arrives like a wave washing over and into me, embodying me, and I surrender, as long as it takes to come up again.
I had two months of being with Elizabeth when we knew she was dying, and I had time to say goodbye to her many times as she shifted and changed during that time, but the one who I’d known before that – that Elizabeth is the one I didn’t know I was never to see again, and that’s the one I miss the most. The one who told me stories about her friends, met me for coffee every week, talked about socialism and feminism and was outraged along with me about some injustice, made me worry about her choices in men, made plans for graduate school and buying a house in the desert, and loved me as only she could. I only recently started having the phenomenon of thinking of calling her to tell her about something I think she’d like, and then laughing at myself for it. I’ve had the awareness that some small part of me is still waiting for her return, as though she were just on a very long journey, which of course she is…
“What we have once enjoyed we can never lose. All that we love deeply becomes a part of us.” ~ Helen Keller
Coming next – emails from June, 2012, the next stage of Elizabeth’s journey…
I am very aware these days of moving back and forth between two aspects of myself, two archetypes: one is the Mother, the personal self, the one who grieves deeply, who is angry and sad, who misses my daughter Elizabeth, who truly cannot comprehend that she could be gone, that she died. The other is the Wise Woman aspect, the one who is completely at peace, who knows that Elizabeth finished everything she came here to do, that she is at peace, that she was always aware on some level that she wouldn’t be alive very long and was prepared for death at 22; that she is communicating with us, teaching me, even more present and available to me now than she was in life.
I am so grateful for both of these selves. When I am fully in one, there is a witness self who can remember that there is more than the perspective I hold in the moment. I can see that if I didn’t have the ability to access, or simply remember, the Wise Woman, I could be in hell when the Mother is present, at least when she is deep in the grief process, but with the awareness that there is another one present, I know that whatever I’m in is not forever, and that makes all the difference. Even when the Wise Woman is fully present, I am grateful for the Mother aspect bearing witness, as she is the one who connects with Elizabeth as she was in body, who remembers her love, her attitude, her intelligence, and allows for the personal aspects to remain.
Sometimes I can move between the two in a matter of moments, as when I was working with a client the other day, and the Wise Woman self was present, working from a loving, heart-centered place, listening, and not involved in my own story. When my client asked about Elizabeth though, having seen a photo, or read about her, I moved into the personal Mother aspect, talking about her, allowing the tears to come, and then shifting back to the transpersonal. Since Elizabeth’s birthday on January 12, I am more often in that place of the personal, with tears close to the surface much of the time. I just received a text from someone whose young brother in law is in coma, and she was offering her sympathies about Elizabeth, and that made me burst into tears…and then pause, center, shift, and I’m back in this place of peace and gratitude.
I am so grateful for the years of practice of heart-centering. I know that has made an immense difference. That from the heart center, I don’t get pulled back and forth, that the heart-center can hold all the aspects of myself, all the archetypes who are present. I am blessed to have wise and wonderful friends who listen and guide me. I am grateful to have time and space to explore these places, to go deep into the Mother self, allowing the grief to move through, and to have access to the Wise Woman archetype/self, finding the gifts and the gems within this process, knowing that there is more to come, knowing from experience that the heart-opening pain brings immense joy and gifts beyond our imagination.
I know her birthday will not always be so completely intertwined with sadness and longing, but I imagine it may always be bittersweet. Sweet with the gift of knowing her for 22 years, hearing her laugh, seeing her beauty, feeling her love. And yet missing her tangible, bodily presence.
I am gathering with my mother, sister, brother and close friend/godmother of Elizabeth for these days preceding and bringing us to Elizabeth’s birthday. I knew in my head and my heart that this would be, and is, one of these heart-breaking-open times, her first birthday without her here to celebrate in person. But we are finding ways to celebrate and honor her.
We’ve been planning our tattoos, my sister creating a heart, with 2 Es woven into it, just as she is woven into our hearts. Preparing a tattooing ritual in her honor, in sacred circle, with food, flowers, candles… We each celebrate and mourn in our unique ways, some quietly, some alone, some with beloved community, some unaware of what we do until much later – all potent and important, all seen and acknowledged by Elizabeth herself. I know she is close by, I feel her presence today as I buy flowers for her, eat some of her favorite foods, walk in the Berkeley Hills with my mother, awed by the extraordinary beauty of this place, and taking Elizabeth with me, everywhere I go.
Happy birthday my beloved daughter. I trust that you are walking in beauty, surrounded by beauty, and feeling a radiance of love from all of us who knew you.
Luminous Blue 