I am honored to be nominated for my first blogging award: The Versatile Blogger Award (which apparently also means I’ve received the award, I wasn’t sure at first if there was to be a vote, or what happened next…) I am grateful to Tia at Life: Everyone Has One for the award, and encourage you to go check out her blog.
I’m grateful, but also have to say I’m not sure how versatile I really am, here, at least. This blog is singularly devoted to this particular journey I’ve shared with my older daughter in her last year of life, along with her writing. In the rest of my life I’d say I’m versatile, but here I feel I’m much more focused than I am elsewhere, and I like having one place in my life where that is true. So on to “the rules”…
Here are the rules for those of you I have nominated (which means you’re receiving the award!):
1: Display the award on your page.
2: Announce the win with a post, and link it back to your nominator as a Thank You!
3: Present 15 awards to those of your choosing.
Here are 15 blogs that I love, some related to the topic of loss and grief, and some that are simply wonderful writing. An eclectic mix:
This week it has been one year since my daughter Elizabeth had 2 brain surgeries. The first one, July 19, 2012, we hoped would remove the cancer from her brain, and the second on July 20 was done to save her life (for a time, anyway), as her brain had started to swell, and the neurosurgeon needed to remove part of her skull to allow space for the swelling. I anticipated that with these anniversaries, I would be brought back into the memories of that time. That I would relive all the sadness that came with learning that the surgery was not successful, and then that there was no more treatment and Elizabeth was not going to survive very long, most likely a couple of months.
Yet grief is rarely predictable, and I’m feeling peaceful, relaxed, perhaps a bit disengaged, but also very present. Even when I try to go back into the story, it is not enough to move me into grief. I was worried that I was becoming numb, but I am full of feelings, one after another, from sadness to gratitude, to joy.
I am not numb – when I talk to a new friend whose son also died, I am moved to tears when she tells me how seeing photographs of Elizabeth moves her so, and that she wishes she had lived so she could meet this amazing young woman. I was immediately aware, however, that she would not even know who Elizabeth was if she were still alive. Her writing, her wisdom, her beauty was not available to so many while she was alive. And so I find myself grateful, for Elizabeth’s life, and even in some bizarre way for her death – that if this was her time to go, that she did it with such grace, and that her writing and beauty is reaching so many.
Here are some of my writings from one year ago:
July 23, 2012 (still in ICU at UMC hospital)
I stayed up with her all night, the anniversary of my father’s death. Sitting vigil, not wanting her to leave to be with him on this potent day. Praying all night to my ancestors, her guides, all the forces, asking them to have mercy. She stayed that night.
July 29, 2012 (now at home with hospice)
Yesterday was a day of almost blissful peace, radiant grace and devotion. Today, I was kept awake after reading an email depicting the possibilities of a painful and frightened death for Elizabeth, and I couldn’t sleep, wanting to find someone to blame – the surgeon, (he shouldn’t have given us false hope, when he must have known he couldn’t remove the whole tumor), my partner Zelie, (for not being here, not wanting to be here so desperately she’d just jump on a plane without asking). But knowing that there is no one to blame, each is playing her/his part just perfectly, divinely orchestrated, and I’m truly grateful that Zelie is clear about where she needs to be, and she can’t help me here right now.
So today I’m more in that shattered grieving place, almost unbearably sad, but not unbearable at all, no story with the sadness, and even with the grief and the loss, aware it’s just another feeling and I can actually enjoy the experience. My worst fears are being realized (some of them at least) and I am in such a state of grace, being with Elizabeth in her radiance and her presence, that I can be at deeper peace than in my daily life. This slowing down time is just what i need. If i go into stories of who she might have been, grandchildren never conceived and born, no wedding and falling in love, no more writing and being seen as an amazingly gifted writer… and on and on, then I can be devastated, though not right now as I write this. Right now I see the story may all be about me anyway. Me having new “babies” being birthed, me falling in love and getting married, me writing and getting seen as my gifts, and hers, get shared with the world.
Elizabeth at home in hospice with her cat BlueElizabeth Blue and Lucia Maya, at home in hospice
Victoria (my long-time friend and Elizabeth’s godmother) just called us soul mates, me and Elizabeth. E has written about us sharing the same heart, and I am certainly in the same field she is right now. I can’t think about much other than the moment I’m in right now. Elizabeth told me, when i was telling her of her friend Cailin’s planned visit an hour later yesterday, that I don’t need to tell her those kinds of things, meaning anything beyond what is literally right in front of her.
I asked her a few serious questions yesterday: if her heart stopped or she stopped breathing, does she want us to call 911 and have her resuscitated – she said no; and if she’s alive but can no longer make her wishes known, who does she want to make decisions for her – she pointed to and named me; and finally I could tell she was tired, so I asked if there was anything we could be doing to make her more comfortable, and she said “stop asking me questions”. I loved it. And stopped.
Today when she asked me how I was, as she does after I ask her, I said sad. She said she knew, and asked why. I told her I was going to miss her, and she asked when? I said I thought she was in the process of dying and I would miss her when she was gone. She asked what i thought death is, and I said when we leave our body. And that i’ve heard from many people who’ve died and come back that it’s a beautiful experience, more beautiful than anything in life, anything they experienced on earth. She nodded. I said I wasn’t sad about what she’d experience, I was sad about my experience of missing her, but I know her spirit will always be here. She nodded. I told her I had thought she’d always be here, and that was why I was sad.
Elizabeth’s been saying since her rediagnosis that she is going through a rebirth, and she went all the way back to the pre-birth state in the hospital: unable to speak, or even make sounds, unable to open her eyes, then being born: with the (breathing) tube pulled out, able to speak and breathe on her own, but still totally depending on others with a feeding tube and IV fluids, then removing those, and starting to swallow, to drink and eat, to speak again. And now, at home, still dependent, and yet completely reborn, with divine wisdom and no mind. Quiet Mind she calls it. She seems to be completely comfortable and at peace.
It occurred to me, that for her to get to this state of peace, she was willing to go through cancer in her brain, 2 brain surgeries, a stroke, and now the deathing process, to move into this state of grace and divine mind. and not just for herself, but for so many around her, touching countless lives.
E’s been seeming farther away now. Not so much in her own world, as she’s been, but less of anywhere.
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
For where but in self-expression do we find the liberation that is the dance of the soul?”
by Elizabeth Claire Kurland Meagher (aka Elizabeth Blue)
A Lifetime
I want,
To quote Rumi.
I want to say one thousand words of thanks.
I want
To throw
One million rose petals in the air.
I want
To kiss the sky.
I want God to know that I am grateful
I want to be humbled by the sheer knowledge of what is.
I want to blow into one million pieces, and dedicate myself to the world.
I want to say thank you,
And mean it.
I want to tell the world,
The universe,
That my Indian lover is
The sky
The moon
And the sea.
I want you to know that beauty is everlasting,
And that I am only a temporary placement of outer beauty.
I want you to know that the beauty inside me is everlasting.
And I want you to know that I did not create this.
And,
I created some.
I want you to know that eternity is forever, and then more.
I want you to know that ‘me’ is just a figure of speech.
I want you to know that I love you.
And that life,
Today,
Was one of those days worth living.
Today I was planning to share something else entirely, but I believe my daughter Elizabeth’s spirit guided me to find this. It is from a collection of writing from her freshman year of high school, 2004-2005. This poem was written when she was 14 or 15. It feels to me that she has received everything her soul desired here…
In her introduction, she has this to say: “A quick note on poetry: I would like to say that I can hardly take any credit. It is my hand that writes the words, but it is something else that comes through me to deliver these expressions and words to you.”
A new awareness as i sit at the airport waiting for my flight to visit my daughter Julianna in New York: for years I asked the divine over and over how I could serve to the greatest degree possible, and this is what I’ve been given. Framing it in this way, that Elizabeth’s death can push me into greater service to others and to the divine, helps me and keeps me moving forward and inspired, feeling more grateful and hopeful. It’s helping me to shift back into a place of trust that all is unfolding as it is meant to.
I don’t know yet what this might look like in the future, but for now I’ll continue doing what I know to do each day, being with family, working with clients and writing as I can…
The deeper that sorrow carves into your being, the more joy you can contain.
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” ~ Kahlil Gibran
This past week included the graduation of 4 young women I know from the University of Arizona, including my daughter Elizabeth’s best friend, who was also a creative writing major, and Elizabeth would have been graduating along with her, if she were alive. I attended her graduation with such pride and joy for her, an amazing and brilliant woman, grateful I could witness her commencement, and at the same time so deeply sad that Elizabeth was not there as well. In an amazing reading I had with a medium, (who contacts and shares messages from those in spirit) Elizabeth had communicated that she had “graduated” in the spirit world, and is completely joyful there. She even showed him herself with a diploma, which had been important to her, so that brought me some comfort.
On the heels of that tumbled Mother’s Day, my first without Elizabeth present. Again, it is filled with such a combination of emotion – gratitude for my daughter Julianna, whose 20th birthday it was that same day and sorrow that she was far away in New York; gratitude for being the mother forever to both of my inspiring, beautiful and amazing daughters, and to my own mother, for all the gifts I’ve received from her, including being born; and greater sorrow that Elizabeth will never again be with my on Mother’s Day, not in her physical form…
Elizabeth Blue and Lucia Maya ~ April, 2012
So I’ve been allowing this deep well of grief and mourning to bubble to the surface, and flow through. I’m aware that when I’m in it, I’m not clear enough to write, not clear enough to read through and select Elizabeth’s next pieces of writing that I so want to share here, and have to trust the process, trust the timing, not rushing or pushing, as much as I’d like to at times! This beautiful quote by Kahlil Gibran spoke to me and resonates deep in my being, and so I hope it speaks to you as well.
Luminous Blue 