Tag Archives: hope

Catching Up

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I’ve been feeling exceedingly sad today, and the last couple of days, and I had a few ideas of what might be contributing, including one of my dearest, most beloved friends about to have surgery for cancer for the third time. It’s also coming up on the anniversary of my father’s death, which continues to bring grief to the surface, even after 48 years.

Then I remembered that it was three years ago yesterday that Elizabeth was in the ICU, and had her second, emergency brain surgery.  The day before that was her initial one, which we learned was largely unsuccessfully at removing the large tumor that had not responded to chemo. Three years ago today was the day she had a stroke, and could no longer move her legs or her left arm.

And now, it’s making more sense…why I’m feeling like once again, it’s the end of the world as I know it. (Which always reminds me of this great song, which I start hearing whenever I think that phrase: https://youtu.be/Z0GFRcFm-aY)

It’s amazing how the unconscious and the body remember these anniversaries, even when the mind doesn’t.

Starting in January of this year, these months have been both amazingly wonderful, and extremely challenging, which are both reasons why I haven’t been writing much here. Two close family members have had worrisome diagnoses and unresolved health issues. A friend’s husband was diagnosed with lymphoma. By the time it was diagnosed, it had already spread throughout his body, and he died within weeks. Another friend’s niece, about Elizabeth’s age, had been diagnosed with a form of leukemia in the fall.  I watched intently, from a distance, as she progressed through brutal treatment, to an amazing remission, only to be followed immediately by her heart failing from the chemo. She died about three months ago, at the age of 18.

As I mentioned, I’ve also been watching from afar as one of my best friends is dealing with cancer, doing amazingly well through over 18 months of chemo, radiation, surgeries…showing resilience and strength that is so like him, and with his wisdom, compassion and loving presence completely intact.

Each of these experiences has impacted me deeply, bringing emotions and memories to the surface that I sometimes have the luxury of allowing to remain below. Not forgotten, but not front and center either. I no longer can distance myself. I no longer have illusions that everyone will be fine; that people don’t die because they are young, or seemed healthy just last week.  Of course I knew this before, intellectually, and somewhat internally as well, since my father had died when he was 30, my uncle at age 21. But I was very young then, and losing one’s child to cancer is like nothing else, not even the loss of a parent.

Almost 3 years…

Almost 3 years since Elizabeth died and I don’t cry every day. I think of her more often as she is now, appreciating her presence in my life. I spend less time now thinking of her as she was in her last couple of years of life, at age 21 and 22, less time longing for another phone call or meeting for a latte and a scone… I have more random memories of both her and J, from all different ages, some joyful, some regretful, some proud, some guilty – more what feel like “regular” mother memories.

Elizabeth Blue, Elizabeth Meagher, Lucia Maya, before cancer,

me and Elizabeth, ~ 2008

Elizabeth Blue, Elizabeth Meagher, Lucia Maya, before cancer,

me and Elizabeth, ~ 2008

A week ago though, a friend had gifted me with a trip to a spa. As I was relaxing in the soaking pool, a mother about my age entered with her daughter, who looked to be in her early twenties. Their easy communication and manner reminded me a great deal of me and Elizabeth, and it took all I had to keep from sobbing right there, the loss so fresh and great. It also reminded me that it is in those quiet, reflective times that the emotions have more space to come to the surface. Much of my life is occupied by working with clients, listening to stories about their lives, reading about other’s lives on Facebook, blogs and books, and on and on.

It’s easy to fill up all the minutes of the day, and why I treasure my times of reflection and meditation. When alone in the mornings on Maui, I play Pandora on shuffle while I make my breakfast smoothie, present with my thoughts, with the other worlds and connection and messages that come through the music.  It gives me a few minutes of this time for reflection and connection. When here on Molokai, I spend time in the ocean, watching the clouds and feeling Elizabeth, feeling her presence in nature, talking to her and feeling her response. It’s not enough, but I’m so grateful for these precious moments.

Elizabeth Blue – the photoshoot by Jade Beall (part 1)

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Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall
Elizabeth Blue, April, 2012 by Jade Beall

Click on any image to see them larger.

These are just a few of the photos taken by the amazing artist Jade Beall, of the Beautiful Bodies Project, in April of 2012, when Elizabeth was in remission from cancer.  She had finished 6 chemo treatments, and we were celebrating that she had no sign of cancer in her body.  I was delighted that she’d agreed to be photographed, wanting to document this time, this transition time in her life, showing all aspects of herself, with hair and without, with clothes and completely naked. We did not know that just 2 months later she’d find that the cancer had recurred, spreading to her brain, and that she would die 3 months after that, on September 23, 2012.

I am incredibly grateful that we have these beautiful, revealing images of Elizabeth Blue – a beauty inside and out.

Beginning to Leave the Hospital by Elizabeth Blue

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(One of Elizabeth’s essays when she was almost done with her first (and we thought only) round of chemo, followed by her musings on titles and structure for the book she planned to write about this experience. God I love her mind and and am so grateful to have these writings…)

Elizabeth Blue, Elizabeth Meagher, lymphoma

Elizabeth Blue, Spring, 2012

Beginning to Leave the Hospital

March 5, 2012

I feel like I’m only now beginning to walk out of that hospital.
UMC, the day after they diagnosed me.  The day after they told me it was cancer.

I was lying in the hospital bed drugged up on morphine right after surgery (my first surgery) and my biopsy.  I looked at my mom all swollen with makeup running down my face and said to her (smiling) “If it is cancer its going to be ok.”  And she said “Yes.”  And then a few hours later they/the surgeon came to tell me it was indeed cancer.

I feel like only now, approaching treatment six, (the last one please god).  Chemo round one, round two, round three, round four and round five are done.  Whew.  I still feel like I’m in the hospital.

The shock: the utter senselessness and cruelty of being beautiful and twenty-two and having cancer is just starting to wear off and the feeling has begun.  The feeling of having had cancer.  I feel like the shock and senseless and sudden, unprovoked tragedy of it all kept me mentally in the same room it all happened in until now.  Now, six months later, my mind is beginning to catch up with the body that gathered her things from that room, left the hospital, went to school and told her family and teachers she had cancer.  And got on with it.  Took the treatment like a grinding kick in the face and a wet cold punch in the stomach, week after week and sat there quietly and didn’t say anything.  And didn’t yell at god or the world or the doctors for A: letting this shit happen and B: letting the treatment, the cure be so goddamned miserable that it destroyed her feeling and her heart and her youth and made her lose her hair and the oh dear god, fucking pic line.

They called the thing they put in me a Pick Line.  THEY CALLED IT A PICK LINE, WHAT DOES THAT MEAN TO YOU?  They put this tube into my veins and all the way down into my heart and I didn’t want it and I didn’t understand what they were going to do until they already were doing it. They exposed me to way too much radioactivity in the process and sewed it up into my skin like it was no big deal and it hurt, it fucking hurt.

Then there was this big gaping wound and a tube sewn into my body permanently and they forced a long tube into my heart and I didn’t want it and it wasn’t necessary and that was the worst rape I’ve ever experienced.  And I never cried.  I sat there and was good and quiet and cooperative because I trusted that they knew what they were doing and that they could save my life.

And they did.

But me, the real me who talks and has feelings and still can’t comprehend the fact, that cancer was inside of me, that it even could be.  The me that still can’t wrap my head around something so unfair and unpleasant could happen to the blessed child who led a charmed life.  She (that me) is still in the hospital.  Because the shock, the pure and blessed numbing shock of the news that cancer was in me froze her in time.  It froze her so the me who is numb and unfeeling and quiet and detached and removed could take over.  Take the chemo, take the treatment, take the tragedy.  And hold space for the sadness of others.  The me who I generally associate with is just beginning to de-thaw in that hospital room, shake her head and wonder how the fuck did I get here and where do I go now?  I’m hoping, I mean I think, she can come join me now.

(Musings on her future writing…)

Elizabeth Blue, Elizabeth Meagher, lymphoma

Elizabeth Blue, with Blue, Spring, 2012

The Stories We Will Tell Our Children
The journey of a 22 year old cancer survivor

By
Elizabeth Blue

Why this title is important:

Dr. Miller told me on our last meeting that all this would just be a story I would tell someday (an unpleasant one)
The realization that I want children came with having chemo and being told I couldn’t.
My children will exist because I had cancer not the opposite (strange)
This is my history
Buildings, ie hospitals and doctor offices are going to be the transitional and pivotal star points for this experience.  THIS IS THE STRUCTURE FOR YOUR STORY ELIZABETH.  IT HAS ALREADY BEEN GIVEN.  THIS IS LUCKY.  BUILD THE STRUCTURE/SECTIONS/CHAPTERS OF THE BOOK AROUND CHEMO ROUNDS AND HOSPITAL VISIT AND DR. VISITS.
Interview Mom, perhaps others as an example of how narratives vary
talk about trauma theory and troubles with perception
there is a lot here.
Now, should it be a biography or just this story?

Other ideas include:

“High Tales and Desert Winds”
“For My Mother”
“Coming Home”
Mama: How having cancer brought me back to my mother  (The journey of a twenty two year old cancer survivor.)

©Elizabeth Blue, 2012

Keep Living

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A Reason to Keep Living

This is a piece Elizabeth Blue wrote, from the period when she was going through chemo for the first time. She was being treated for non-hodgkins lymphoma which was diagnosed 2 months earlier.  The doctors had told us she had an 85-90% chance of full recovery at this point.

Elizabeth Blue, Jade Beall, Elizabeth Meagher

Elizabeth Blue, April, 2012  (photo by Jade Beall)

1.20.12

Keep Living

It’s sort of funny this thing when you have cancer.  One thing about it is when people are talking about someone who they know who has died recently, usually part of such a story is telling of how they died or what they died from.  The funny thing is when you have cancer and someone is telling a story about someone they knew who died from cancer, they chose to omit that detail.  And that’s how you can tell.  You don’t really want to ask about it (it’s a normal question, ‘how did they die?’) because you can tell and you don’t want to make the person telling the story uncomfortable.  You don’t want to make them be the one to say cancer kills to your face.

The funny thing is that when you have cancer, if you’ve had it for any length of time you had to come to grips with dying long ago.  You’re sort of over it now (that is if you’ve established that you’re probably not going to die).  You’ve dealt with that possibility and, in a sense, moved on.  You kinda have to move on.  You kinda have to move on from that idea of death if you have any intention or expectation of living.  I think of a friend who has cancer (an uncurable kind she will live and die with, but probably has a long time to live).  She told me that at first when diagnosed she was very depressed.  For about a month all she could do was be sad.  And then a friend said to her: “Tita, you can’t die while you’re still living.”  And now she sees beauty in everything because it’s what makes her so so happy and want to keep living.  I think that’s the thing, you know, you’ve got to find that thing that makes you want to keep living.  For Tita it’s beauty.  

My Godmother recently asked me what my thing was, that thing that I want to live life for.  At my age there are a lot of obvious potentials to want to fulfill.  (Having children, a husband, a career, etc.) but these aren’t palpable things you get to experience right away if you beat cancer.  They’re a bit far off in the future to put that desire in your hands, a desire strong enough to make you want to live as much or more than you’ve ever wanted anything before.  

What came to mind for me was the carnal.  Wanting to live long enough to have that amazing feeling of heartbreakingly beautiful sex with a person after you’ve wanted and been imagining it for months.

That’s enough for a twenty-something person to want to keep living another day, truly beautiful sex.  It doesn’t even have to be actual sex, it could be just the idea of it.  The idea of the hunt or the chase and the exuberant feeling of wanting someone and guessing that they might want you too.  Some days that is quite enough to keep me alive.

Elizabeth Blue ©

Assumptions About Life and Death

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

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

Elizabeth Blue, assumptions, grand canyon,

Elizabeth Blue – at the Grand Canyon, January, 2012

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

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

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

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

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

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

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

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

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

A Long Journey from the ICU to Hospice – Emails from July, 2012

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These entries from my emails and journals from July, 2012, one year ago, tell the story of the hardest period in my daughter’s time of living with cancer.  Elizabeth Blue was in the ICU after a recurrence of lymphoma in her brain.  Since June 12, 2012, she had had two rounds of chemo which did not shrink the tumor, followed by brain surgery in an attempt to remove the tumor, which removed some, but also caused massive swelling in her brain. This necessitated a second surgery to remove some of her skull to give her brain room to expand, followed by a stroke. Even with all this, I was still holding the vision of her full recovery, now including rehab for her to learn to walk again.  Though I could feel the weight of all this news preparing me, I was angry at the nurse who first mentioned the word hospice.  I’m now grateful, as it finally propelled me to ask the doctors for a realistic assessment of what we could expect. And then, the ultimate devastating news, that there was no more treatment, and we should consider hospice care.

Though this was extremely difficult, the grace and radiance of love was immense.  Even as I read back through this period, I’m astounded at what we were all able to be present for, and that we did not simply endure, but our hearts expanded and opened more fully than I imagined possible.

7/22/12
Hi all,
sorry i don’t have good news – Elizabeth had a stroke which is affecting her legs – as of this morning she can’t move them.  They can see from the scan that nothing else is affected. They believe it’s because of the swelling (in her brain), and that is putting pressure on small arteries – one must have bled and that’s what caused the stroke.  This is devastating, but they are hopeful working with rehab will help, though that is down the road a ways.  She doesn’t know this, at least we haven’t said it directly, though she was sleeping in the room with pain meds when the doctor was telling us and showing us the MRI.

She still has the breathing tube in which is very uncomfortable, although she’s breathing fine, they’re concerned about when she gets too relaxed with the pain meds that she won’t be able to clear her lungs and throat.  I’m pushing to get it removed, but of course am concerned about her safety as well.  Hopefully tomorrow…They don’t want to take it out and have to put it back, which of course i don’t either.

The good news:  She is able to understand all we are saying, and responding well with yes or no with her head and her right hand.  She can follow requests easily, like to stop biting on the breathing tube, though it’s hard not to do, since it’s so uncomfortable.  They are giving her more anti-anxiety meds today, which should help some.  They expect her to be able to speak fine, once they take the tube out.

Her left hand is still not moving, but that’s from the continued swelling in the brain, and the doctors are sure that will come back once the swelling lessens.  The problem is they’re trying everything and nothing seems to be reducing the swelling.  It’s not increasing, but not decreasing either.  Her face is less swollen, and she can open both eyes today, which is good.

That’s all for now. Thank you all for your messages and love and prayers.
much love,  Lucia

July 22, 2012 – Lucia’s journal

today Elizabeth had a stroke. i can’t believe i’m writing that. this is not entirely unexpected, even though she’s 22.  she has lymphoma, that recently reappeared in her brain, and there was concern she could have a seizure that would lead to a stroke, but this happened because the tumor and/or swelling of the brain, is putting pressure on small arteries, and one of them must have bled. that’s what they think. so the nice young Indian doctor, neurosurgeon resident shows us, me and Greg, the father of Elizabeth who I was once married to for 11 years, the MRI done this morning.  they did this particular MRI because this morning she couldn’t move her feet, so they were suspicious.  suspicious is not a good thing when you’re in the ICU in critical condition.

July 23, 2012 (still in ICU at UMC hospital) – Lucia’s journal

stayed up with her all night, the anniversary of my father’s death. sitting vigil, not wanting her to leave to be with him on this potent day. praying all night to my ancestors, her guides, all the forces, asking them to have mercy. she stayed that night. 

7/24/12 – hospice 

Dear friends and family,
I am exhausted, with a long night up with Elizabeth last night, and pretty devastating updates from the medical team.  They (her oncology doctors) do not think that going forward with chemo or radiation will have any significant benefit, and would have side effects that aren’t worth the possible short additional time it might give Elizabeth.  The neurosurgeon is clear he can’t operate again, as the swelling in her brain is too risky, and he’s already removed the tumor he could access  So this leaves few options, other than prayer, love and miracles.  They are recommending hospice, once we get her stable enough to move out of the hospital.  We do keep hearing stories of people who were told there was no hope, and then recovered from different means, so I’m open to a miracle, and I’m also preparing myself for the end of her life as best as I can.

Elizabeth still hasn’t been able to speak, as the breathing tube/ventilator is still in, though every day they’ve been hopeful she’ll have enough strength to remove it, and now “promising” tomorrow morning, but each time they’ve been worried that she will be fine for a while, but not have the strength to breathe on her own after some hours, and would have to reinsert it.  They can do that, it’s just traumatic.  I think they understand that at this point, it’s a priority that Elizabeth be able to communicate her wishes, so I think it will happen tomorrow.

Elizabeth is being quite clear about what she wants (ie who in the room with her – mainly me and her dad, Greg, etc), but with only yes and no, and some one-handed communication, it’s limited.  So hopefully when they do take out the tubes, she will be able to speak!  It’s so uncomfortable, she tries to pull it out when she gets a chance.  She knows generally what we’ve heard from the doctors, and her spirit feels very low.  That was just this afternoon, and we’re all full of emotion….We haven’t yet asked her if she wants to try treatment still, or if she just wants to try to come home.  Tomorrow that conversation will happen I think. She will sleep better tonight hopefully, with some good sleep meds, so we should all be better rested in the morning – I’m home and Greg is in her room with her tonight, and Victoria (close friend and godmother) is sleeping in the hospital too, in a small family/waiting room.   My mom is here and Julianna (my younger daughter who was 19 then) of course, and everyone is being so wonderful and supportive.

much love to you all,  Lucia

Jul 26, 2012 (my responses to emails from friends)

it feels like the decision is made, but we never know what the divine has in store for us until the next moment…

…staying present with what is, and in sorrow and  much gratitude…

…she is so blessed with such grace, and i can feel she is being held in the arms of the divine. as are we all.

7/27/12
Hi all,
thank you all for your continued prayers, love and the work all are doing on behalf of Elizabeth and the rest of us.

Elizabeth came home from the hospital yesterday at 5pm and is comfortably settled in her (hospital) bed in the living room.  My sister is here and my niece, my mom is still here, Elizabeth’s dad, Greg, is staying as well, and her grandparents from Boston came yesterday. Julianna is incredible, so present and loving and tuned into everything that’s going on. I’m in awe.

The hospice people have been wonderful, and especially Ann Marie, our dear friend and Elizabeth’s doctor, has been amazing, helping get her settled, with meds and everything we need.

Elizabeth is able to speak, though very quietly, and is really sweet, expressing lots of gratitude (every time someone brings her something or does something for her, she says thank you, even when they’ve already left the room – hard to describe the childlike innocence and beauty in this.).  She is different, speaking slowly, and usually only in response to a question – she says her mind is quiet.  She is also drinking lots and eating in small amounts.  She is present, and also feels far away, more peaceful, with less anxiety and agitation since coming home from the hospital. She’s not asking many questions now, and isn’t even interested in having her beloved cat Blue come visit her.

Today was full, with hospice folks (nurse, social worker and chaplain), and then E’s best friend Samantha came and showed her the tattoo she got yesterday of E B (for Elizabeth Blue) on her arm (made us all cry – Elizabeth has always told Samantha she should get this done, and when she heard about it this morning said now she knows Sam really LOVES her), and shared stories of dozens of E’s friends here who sent their love and tears and stories with her. Finally a friend who does sound healing came and played the crystal bowls which Elizabeth loved, and it was a beautiful experience for all of us.  The radiance in Elizabeth and in the room is incredible.

I know it’s devastating for all of us to lose her, or even the idea of losing her, and I imagine for those who aren’t here it might be even harder.  If I stop and feel what this looks and feels like from outside, it feels overwhelmingly sad, but when I’m present  in each moment it feels fine.  The minute by minute process is beautiful and grace-filled, and I am truly blessed to have this time with her, and for so many of our family and friends to be close by.  It does feel like she is at peace, doing whatever she needs to do to complete.

There are many (hundreds even) who are doing prayers and healing work for Elizabeth all over, and I think this combined with all the love here is helping us through this incredibly difficult passage.  It does not feel like the time to go searching for miracles, but to be fully present to the miracle that is happening in each moment. We are still in the 40 day healing intensive that Elizabeth and I started July 2 and it goes til August 12. I know that healing takes many forms and looks different for each of us, and I have to trust that this is exactly the healing process we need, even though it’s not our preference.

Here’s a photo of Elizabeth from today.  She is even more beautiful each day.

love to you all,
Lucia

Elizabeth Blue, hospice,

Elizabeth’s first day at home in hospice

July 29, 2012 (from an email to a friend)

…she is being showered with love and is a radiant state of grace. it is heartbreaking and breathtakingly beautiful.

Elizabeth Blue, Lucia Maya, hospice,

Elizabeth Blue at home in hospice

7/29/12 (to a good friend)

hi John,
she knows she is dying, and is speaking very little. mostly if spoken to, she’ll reply or respond to a question.

when i was asking her questions yesterday about if she wants to be resuscitated if she stops breathing etc, she said no, and then i asked about who she wants to make decisions if she can’t verbalize and she said me, and then i asked if there is anything we can do to make her more comfortable, and she said, to stop asking questions. love it.

so i don’t think she cares about anything beyond the moment right now, and planning for anything, even if she wants to eat something doesn’t make sense to her, or matter.  she’s beyond that.

i trust we will know what she wants and if it comes to ask any specifics i will.  i’ll ask if she’d like to see you though, if you feel called to come?

3 people leaving today, my niece, stepmom and Greg. leaving my main support of Tashe (sister) and my mom, plus my stepdad who’s being lovely and mostly present and quiet. julianna is extraordinary.   my brother comes later in the week for a couple days.

zelie (my partner who had been in Hawaii during these last 7 weeks) is asking me if i still want her to come back early, after the retreat is done, rather than a week later, and i can’t tell her. i’m like elizabeth right now, so in the present moment, don’ t know what i want later today let alone next week. i know i’m not the same person, i can’t give much to anyone for a while though. i need to be in here. i know you understand.

i would love to see you though. you bring me a certain comfort like no other. and i imagine for elizabeth too.
love, Lucia

7/30/12 an email to our Tucson community and my clients

I am taking a hiatus from my outer work while I focus on my family.My older daughter, Elizabeth Blue, is home under hospice care now, and she is being showered with love and in a radiant state of grace. it is heartbreaking and breathtakingly beautiful. The radiance in Elizabeth and in the room is incredible.If I stop and feel what this looks and feels like from outside, it feels overwhelmingly sad, but when I’m present in each moment it feels fine. The minute by minute process is beautiful and grace-filled, and I am truly blessed to have this time with her, and for so many of our family and friends to be close by. It does feel like she is at peace, doing whatever she needs to do to complete.

There are many (hundreds even) who are doing prayers and healing work for Elizabeth all over, and I think this combined with all the love here is helping us through this incredibly difficult passage. It does not feel like the time to go searching for miracles, but to be fully present to the miracle that is happening in each moment. I know that healing takes many forms and looks different for each of us, and I have to trust that this is exactly the healing process we need, even though it’s not our preference.

I appreciate all the heart-felt suggestions and questions, but I am spending as much time as possible being in her presence, in our heart connection, and will not be online much these days.

I will not be scheduling individual clients or classes for the time being.

love and blessings,  Lucia Maya

7/30/12 email to a friend

it feels to me like the path is being cleared/has been cleared for her to leave with grace, and my job is to assist in this as much as possible…

some friends are still making suggestions about different remedies to try, and my sense is that to get our hopes up now is too heartbreaking, and best to focus on being present with what is…i’m an eternal optimist, but my optimism is now focused on facilitating this transition as her healing process…

and of course remain open to ALL possibilities.

7/31/12 (to a friend)

oddly, as incredibly sad as i am, the one i know is already gone, and i’m grieving that loss, and the one who is here feels like she’s clearly on her own journey out, so the hope i feel is largely about the passage being peaceful and gracefilled…and just what she needs it to be.

8/1/12 another group update

Hi,
Elizabeth is doing well here at home, very restful, at peace, very quiet and in no pain. she’s on almost no medication now, eating little, drinking some (for some reason every time she drinks at all, she drinks to the bottom of the glass, like it’s just what you do…), observing, but not engaging much unless she’s engaged and will answer questions, usually with a nod yes or no. otherwise she’ll just listen.  she makes her needs known still.

She’s being very well cared for and loved. lots of family and some friends, so much that i’m playing gatekeeper to help keep the energy quiet and slow, as she seems to prefer. Or at least I do!  just trying to keep track of who’s coming and going is a lot, but mostly i’m not trying to, just letting people text when they want to come, and saying no if it’s not a good time…

Zelie is coming home tonight, which will be wonderful to have her presence and support in person, though her support has been tremendous from hawaii too.

Tashe (my sister) is amazing, doing everything from feeding E, massaging her, sleeping on the floor in the living room with her, to a project where she’s hanging beautiful fabric by the back door so everyone who enters that way will slow down and remember they’re entering into sacred space. Everyone here is contributing in their own way, and it’s beautiful how everything gets done and Elizabeth is being so loved and nurtured.

I found some of Elizabeth’s wonderful poetry on my computer, and wanted to share a couple. This first one is  from 2005, when she was just 15.  The 2nd one, “Obama” poem, I’m including the email intro she wrote then, which i love too.
love to all,  Lucia

© Lucia Maya, 2013

Poetry by Elizabeth Meagher

Seeping Back

‘I adore you,’ one moment of holding this, ‘God’ in all parts of my body

Devotion, my mysterious master

‘Don’t adore me’ in cupped hands not holding

Seeping back to the river of eternal life.

Devotion, my mysterious master

I saw the crossroads, one forever movement of light

Seeping back to the river of eternal life

Coming through the body back to the heart of center, back to the sexuality of breath.

I saw the crossroads, one forever movement of light

I felt the gift, one moment of holding forever, ‘I adore you’

Coming through the body back to the heart center, back to the sexuality of breath

This place of unknowing, eternal, unjudged, finally let be, ‘don’t adore me.’

I felt the gift, one moment of holding forever, ‘I adore you’

I am waiting for our hearts to be conjoined in the endless breath

This place of unknowing, eternal, unjudged, finally let be ‘don’t adore me’

Whisper of eternity that says I love you.

I am waiting for our hearts to be conjoined in the endless breath

Why can we not meet at the simple movement, place of undying peace and satisfaction?

Whisper of eternity that says I love you

For if we were to meet in that place there would be nothing left to live for.

Why can we not meet at the simple movement, place of undying peace and satisfaction?

‘I adore you’

For if we were to meet in that place there would be nothing left to live for

Seeping back to the river of eternal life.

© Elizabeth Meagher 9/11/05

Hello All,
I just came across this poem I wrote about a year ago when Obama was in the primaries.  It reminded me of the excitement and love I had for him then when he was still just the bud of a revolutionary idea.  It also inspired me to further appreciate him now.

Thank you for humoring my raw and unedited writing, much love to you all.
-Elizabeth

Obama

We need you.

Us, a people who have slowly descended

From the dream of our ancestors.

Us, a people fallen from grace.

We need you to be our Father

We need your gentle strength

Your wise eyes.

We need your pride and your love

We need your working hands 

Your compassionate mind

To mold our broken humanity

Back into something palpable

And whole.

We need you to remind us of our morality

Our passion that built this community — America.

You who see the best in us

You with trust and hope and unconditional love,

We need you.

We need a leader who will stand tall

among those who cower.

A man who will be brave enough not to drop bombs.

We need a new Father for our country.

One who knows the light in his daughter’s smile

Like a heartbeat.

One who sees the beauty in the shadows

In the tired and poor.

One who will lift the broken body

Of our country from her dying bed.

One who will see that she can be healed with compassion.

We do not need you for our strengths

Our weapons

Our corporations

Our wealthy.

We need you for our schools

For our Grandmothers

For our bus systems

For our foreign policy.

We need you

Standing tall

Standing proud

To pave the way for our future Hillary Clintons.

We need you for your healing tears.

And the resonation in our hearts

That our love is yours.

© Elizabeth Meagher 2008

The End of our “Ordinary” Life – early July, 2012 emails

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EARLY JULY
As I share these emails, from early July of 2012, I realize this is the last period of time when we were living an “ordinary” life.  Granted, my definition of “ordinary” had shifted, given that Elizabeth, my 22-year-old daughter, had already been through one course of chemo for lymphoma and was in remission within five months of her diagnosis; that the cancer had recurred in her brain and her spine only two and half months later; that we were now hoping for the tumor and surrounding swelling to have shrunk enough for a neurosurgeon to implant a reservoir in her head that could deliver the chemo drugs more directly to the tumor; and that Elizabeth was now moving in with me, for a 40 day Healing Intensive so that I could help support and care for her, and so we could together use all the tools we could find or imagine, to invite and facilitate a miracle.

Elizabeth Blue

Elizabeth June, 2012

These emails are from the last time that Elizabeth was still the daughter I’d known for 22 years, with much of her strong personality intact.  Extremely articulate, a deep thinker with incredible wisdom and confident in many ways.  She was beautiful and vain, taking at least an hour to prepare for going out, trying on as many outfits as it took to find just the perfect look for that next event – something she’d been doing since she was 2 years old, along with changing many times every day. She loved clothes and her appearance was one of her great forms of artistic expression, always unique, getting away with wearing things that would have looked odd on most anyone else, but lovely and daring on her.  She was also insecure in certain areas, afraid her friends would forget her if she wasn’t able to be present in all her usual ways – hanging out with Samantha and “the boys”, going out dancing and to shows, working as a barista and at a piercing apprenticeship, going to yoga.

She was scared, aware of the challenges she was facing, yet mostly calm. She was willing to take unpleasant-tasting powders and supplements 3 times a day, without complaint, prescribed by the oncology naturopath, use hypnotherapy, guided imagery, and try a “medicinal” raw food diet with very limited foods.  She and I had twice-daily “check-ins”, to share and discuss anything that was coming up for us emotionally, and she wouldn’t miss them, even when she was exhausted and dizzy with side effects from the steroids and anti-seizure meds she was on.

She prepared for her second and third rounds of in-patient chemo like the divine warrior she was, making conscious choices to bring a semblance of control wherever she could, creating sacred space in the hospital room, with our own decorations, clothing, food, altars, art supplies and books.

If you are following our journey of last year, these emails are detailed summaries of what our days were like as we moved into a greater awareness of the preciousness of life, and the precarious time we were approaching.

Emails from me to family and friends:

7/1/12
Dear Ones,

tomorrow (Monday) Elizabeth goes to UMC to receive her 2nd chemo and is expecting to be there til Wednesday, though it could be Thursday, knowing how things run there.  She feels well prepared, in all ways.  This is the first time she’s getting to pack and bring what she wants with her, rather than coming in with an emergency…

We have a plan in place that I feel excited about – Elizabeth will move in here after getting out of the hospital, for a 40 day healing intensive with me.  It will mean eating whole foods, (which soon changed to all raw foods), getting plenty of time together, working with whatever comes up, physically and emotionally, and doing all the treatments already planned, chemo, supplements, other meds, etc..

It does mean I will not go to the Hawaii Retreat as planned (an annual 6 day workshop my partner and I offer, with participants already registered), and Zelie has lovingly and generously offered to do that on her own.  It feels important for me to be here with Elizabeth for this time.
love, Lucia

On Jul 2, 2012, at 8:04 AM, Elizabeth Blue wrote, to the Nurse Practitioner in charge of her care at the Cancer Center:

Hello Sandy,
Hope you are well.
I wanted to check in about my admission to UMC today (7.2.12).
You had said I would be contacted when they have a bed for me but I don’t know exactly who will be contacting me (You? Someone from the Cancer Center? Someone from UMC?)
Any idea when I might hear from them? And is there is a point when I should contact them someone if I haven’t heard anything? (And who would that person be, how do I reach them etc.?)
Sorry for all the questions, first planned admission seems a bit mysterious. Thank you for your help
-Elizabeth Meagher

On Mon, Jul 2, 2012 at 9:11 AM, Lucia Maya wrote:
great email sweets.  we just wait now…I’m ready, will just put the stuff from the fridge into the cooler, so i can be ready in 5-10 minutes at any point…

feels like when waiting for a baby to come… get packed and ready and then wait. Not quite as exciting of course. But each treatment I see as a new birth, moving you into your new self, your new life…

love,
Mom
Wonderful, I am pretty much ready too, just preparing the last few things..
Reminds me of waiting for a baby to come too ( :
See you soon.
Love
(E)

Elizabeth Blue with Grandma

Elizabeth Blue with her Grandma

Elizabeth Blue in Tucson, Arizona

Elizabeth Blue at home July 1, 2012

Elizabeth Blue, raw food

Elizabeth and Kathleen sharing some delicious raw food

7/4/12
Hi all,

I’m now realizing Elizabeth has been here in the hospital a few days and I haven’t emailed, because things are going really well…She received chemo the first day, Monday, as her pH level was at 7 when she arrived, which is great. That’s the alkaline level needed for the body to be able to process the chemo safely. She’s also been eating foods that promote slight alkalinity in the body, as there’s some evidence that helps to create an environment that is inhospitable to cancer as well.

So it still took several hours to get started, but she received the chemo in full by Monday evening, and since then has continued to feel well. Once her levels come down a bit more, they’ll take her off the IV and stop the rescue drug that helps the body clear the chemo, so they check again tonight at 48 hours.  Assuming that number is good, they check again tomorrow am, and then she can go home. (In order to cross the blood/brain barrier, which protects the brain from being damaged by any toxins entering the body, they had to give her super high doses of the chemo drugs in the hope that they would be so high that they would push through that barrier, and then they needed to clear quickly so they wouldn’t cause damage to the rest of her organs.)

She’s in good spirits, the room looks beautiful as we brought in photos, scarves and favorite items to create her own space. Everyone who walks in loves it! And of course it smells good, because I brought essential oil sprays too…Elizabeth is eating well, slept well one night, not well last night, but still in good spirits this morning.  The nurses have been wonderful each shift, really loving and sweet, and the doctor this time also lovely.  She’s in great hands.

Also, they are still trying to get a line placed to be able to give future chemo treatment (for one of the meds) and blood draws that way.  There’s been lots of discussion, as the veins in her chest have changed due to the location of her first tumor so they can’t place a regular port or PICC line to have ongoing access to her veins . So they’re looking at the possibility of a port in her leg, which sounds like the best option, maybe the only one right now…It’s frustrating because it’s slow, and she’d like some answers, but they are working hard at getting it resolved. No discussion this visit about the reservoir, as they’re waiting for the tumor to be slightly smaller before they can place it. Hopefully before the next treatment, we’ll have to wait and see…

That’s it for now!

love you all, Lucia

Elizabeth Blue, UAMC, Tucson, AZ

Elizabeth Blue in her hospital room with our decorations

UMC room with altar

Altar in the hospital room

Lucia Maya, Elizabeth Blue

Lucia Maya with Elizabeth Blue, while she’s receiving her 2nd chemo

Elizabeth Blue

Elizabeth Blue, self-portrait in the hospital

Elizabeth Blue's cat, Blue

Elizabeth Blue’s beloved companion, Blue

7/5/12 from Elizabeth to her Integrative Oncology MD:
Hello Marnie,

I was just wondering if you have received any more information regarding whether or not it is safe for me to try taking the medication you prescribed me for sleep with the anti-seizure medicine I am on.
I have tried taking both the Lorazepam and Clonazepam for sleep (not at the same time mind you) and while the Clonazepam helps a bit it is still not really doing the job.  I have not taken the Trazodone yet as I wanted to confirm with you first that this is safe.  But with the steroids I am taking as well, sleep has continued to be difficult to impossible and I am becoming increasingly concerned.  I am also open to alternative sleep suggestions from natural ones to sleep aids such as Ambien (which they have tried in the hospital and sometimes works).  Just getting quite desperate…

I have just finished my second treatment and am being discharged from UMC today which is very exciting.  More news to come on how I am responding.

Also: my mom and I have decided to embark on a 40 day (at least) long process of eating lots of raw, whole, home prepared, foods in the hopes of assisting the chemo treatment.  I am also very interested in trying a tea called Essiac (been used as an anti-cancer tea since the 1920s), which has been recommended to us by various healers and friends.  We are curious if you have any knowledge of this tea and or any opinion on its value, potential or possible negative side effects.  Any info or opinions are very welcome and appreciated.

Thank you so much and best to you,
– Elizabeth

7/5/12 – To a friend:
I have moments when it appears that “this shouldn’t be happening!”, but mostly once I feel that, it shifts to “truly this is meant to be” and there are amazing gifts coming out of this, MANY still to be revealed…

Headed out of UMC today, yay! All went extremely well. Just super tired, last night was almost no sleep and I do not do well with little sleep!  but can’t seem to nap either…

Home now.. Elizabeth rested and went to her house to pack, then we’ll go and help load up some stuff… she’s bringing her cat, and hopefully not too much stuff. I’m having a minor meltdown, internally, at least.  She moved out in anger at 17, so it feels right that she’s moving back in for these 40 days, doing it consciously, and then leaving in a different way, consciously and deliberately.  It brings up all kinds of fear though, that she won’t leave, that she won’t want to, that she’ll be “too sick”, etc..

I feel like so much is unknown in our situation, and yours too, and the tension is the really challenging part!

love you mucho,
Lucia

7/11/12
Hi all,

quick overview update:

Elizabeth is now scheduled Thursday am for a port, to be placed in her leg vein, (an access site under the skin to a vein, where they can infuse medicine, plus do blood draws, which will make life in the hospital so much easier!) which could take all day, and Saturday afternoon she has an MRI, outpatient. They will see if the tumor has shrunk enough yet for the cranial reservoir to be placed before this next treatment starting Monday.

Saw Sandy (main oncology NP) with E yesterday – she said there was “enormous progress” just from the first treatment, seen in the first MRI, so that was a huge boost, and good news.  Her blood work yesterday looked great too. Her white count was normal, and her liver is doing well with the treatment.

Kathleen (our dear friend) drove out for 3 days from Colorado and was immensely helpful – with food prep and teaching, listening, hypnotherapy,  playing harp every morning – so many gifts! I told her it felt like our fairy godmother was arriving.  I am amazed how much support Elizabeth, and I, have here.

Julianna (Elizabeth’s 19-year-old sister, home from college for the summer) is wonderful, always sweet and helpful, doing food shopping, helping with everything, including her wonderful presence of love.

There’s so much to do every day, we still haven’t got E fully moved in here, there’s laundry, food prep, medical appointments almost every day!  Elizabeth is amazing, moving through all these appointments, making healthy food, sitting and talking with me when there’s a lot of emotion to process, working hard at getting sleep  (the steroids make that difficult, but working with a variety of things to help, she’s getting maybe 7 hours now, better than the 3-4 she was getting), getting a bit of time with her best friend still, and trying to care for herself body, mind and spirit – it’s a full-time job and she’s doing it with much grace and beauty.  Lots of healing happening, of all kinds!

The last time at UMC, the preparation was essential to having a positive experience. We packed food, beautiful things for the room, clothes she likes, etc…and it all takes time, though some is still packed and ready.  Getting ready for Monday at UMC, my mom is coming tomorrow night to help, and Tashe (my sister) the end of the month – yay!

love to you all,

Lucia

7/11 to my mother, arriving for a visit soon:
Hi Mom,

now I’m having doubts about going to the class Sunday (a raw food class, as we’d now moved into a full-on raw food diet, which we planned to continue even at the hospital)… There’s so much to do every day, Elizabeth was overwhelmed by your simple request for measurements at her apartment (they were going to install some shelving), and is easily stressed to the point of tears.  It’s good actually that she’s crying, because that’s been hard for her in the past, and I think an essential part of the healing process.

I talked with Lisa (my pediatrician cousin, as her father and I were starting to explore the possibility of getting a second opinion about Elizabeth’s treatment options) last night, which was good, but put me into overwhelm with possibilities of other options, UCLA pediatric oncologists, etc.

I’m glad you’re coming! and i want to ask that you be as soft as you know how… E’s moving really slowly, and very frustrated by this (though at times seems normal and quick and then gets tired and slows waaay down).  It’s hard to watch, and I’m working on patience myself.  Really having to move at a different pace…
E’s worried that she won’t be able to do all you, and she, want to do, won’t be able to please you, etc…so gentleness, slowness and patience are all called for now. Thank you for listening to all this!

love,
Lucia

Two Moments – by Elizabeth Blue

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Two Moments

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.

© Elizabeth Blue, 2013