Second Anniversary

9/18/14

I am over the Pacific Ocean as I write, traveling from my home on Maui to Berkeley, California. My mother, in her wisdom, proposed the lovely idea of gathering in the Bay Area, inviting me to join her there, along with my sister who lives close by. My oldest friend and Elizabeth’s godmother lives nearby and will be joining us for some time as well . It was my longtime home, one of my favorite places, that now holds many memories, joyful,  bittersweet, some sad.  It is where both my daughters were born and where I transformed from a young 19 year old at UC Berkeley to a slightly wiser and more experienced 41 year old mother of two, when I was told by the Universe that it was time to move on.

This Tuesday, September 23, 2014 marks two years since my daughter Elizabeth died. It is still hard to fathom that this has even happened, let alone that it has been two years since I heard her voice or touched her hand. It has now been longer than two years since I listened to her laugh, argued with her, met her for our weekly coffee dates to hear what was going on in her classes, with her friends, the guy she was dating or maybe someone new she had her eye on. She would always ask about me too, whether from being taught that it’s the right thing to do, or from genuine interest, I don’t know, but I was always touched and happy to share my life with her as well.

What do I miss the most? I miss sharing a goat cheese and sun-dried tomato scone at Raging Sage with her, both of us wanting the other to eat more than half, and giving the crumbs to the little brave birds that would gather round our sunny table. I miss her texting me to let me know her weekly schedule, making sure we found a time to get together every week.

I miss Mother’s Day when she would always give me a card and a thoughtful gift, and write a beautiful message of how much she loved me and how grateful she was that I was her mom.  I miss her so much that just writing of these memories makes me cry on the plane, and yet I’m so happy that I have them.  I see some photos of her and for a moment see myself, knowing simultaneously that it’s her. I am starting to understand how merged we were, and perhaps still are.

We are meeting for this anniversary with no plans except to be together. I hope to do some things that Elizabeth would have loved. I realized this morning that shopping for second-hand clothes in some of her favorite stores would delight her, and buying some makeup (which I barely wear) would make her happy too. I’d like to get another tattoo, but think this next one will take some planning… Probably we’ll create an altar. Perhaps we’ll have a picnic on the beach, eating delicious foods, taking full advantage of our embodiment, enjoying the sensations that she no longer gets to experience and sharing with her our pleasure and our longing.

birthday altar, Elizabeth Blue, Elizabeth Meagher

The altar on Elizabeth’s 1st birthday after she died, 1/12/13

I look back at these two years since she died, and the year before that when she was dealing with cancer, and in some ways it’s a blur. I find myself having moved to Maui, in a most amazing and beautiful new home, being supported with such grace, and some challenges. I find that I’ve been supported financially throughout all this, somewhat miraculously. I see that my work continues in the ways that I love, supporting others through healing work, teaching, facilitating and writing…and I see that it is shifting in ways I cannot yet know or envision. Another metamorphosis is at hand, being guided and supported, with massive faith and trust, and I can’t explain how or why.

I frequently talk with other mothers who’ve lost a child, or a beloved spouse, who ask me why God would do this? How can they have faith in a divine source who would cause such pain? It is hard for me to answer, because it is simply a feeling I have, a deep belief that I don’t remember being taught, but which has emerged in me through necessity – that there is a purpose to each tiny (and huge) event in life, that each moment is truly as it is meant to be, and there are no mistakes. I know that can sound like superficial cliches, but to me it is not. A quote from our dear teacher Maria Elena Cairo (Zelie’s, Elizabeth’s and mine), that I found in large print in one of Elizabeth’s journals from age 14: “The soul does not fuck up.” That’s one wonderfully succinct way of saying it.

carl jung, jung, coming to consciousnessAnd this just floated across my screen, as photos from my computer ‘randomly’ do: “There is no coming to consciousness without pain…” from Carl Jung. Juxtaposed with that is one of my favorite teachings of the Buddha: that pain is inevitable in life, but suffering is optional, and that has stayed with me since I first read it many years ago.  It is what I choose to do with that pain that matters to me. I can feel it fully, allow the rage to move through, so immense that I want to pull up huge trees and destroy forests with my hands… I can allow the grief to pull me to the floor, sobbing, and then sometimes merging into laughter as another wave comes in, seeing the humor in the self-pity or tragic beliefs I was just holding…Sometimes now it lasts for moments, sometimes I move into days of sadness, but I don’t feel that I am suffering and I am certain that Elizabeth is not suffering. I still feel her sense of humor, her playfulness, and her love when I tune in to her presence.

I am blessed.
I have been blessed.
I will be blessed.
I know grace.
I have felt the touch of grace.
I have seen it encircle and emanate from my daughter while she was dying.
I have experienced unconditional love.
I am moved to tears by what a rich life I have lived these fifty years.
And I will be blessed with each day I am given.

Facing My Own Mortality

Here’s the background: for the past three years I’ve had a bony bump on my forehead.  It didn’t hurt or grow much, changed little, and mostly I ignored it. It started to bother me when I saw it in photographs, and to assuage my vanity, I looked into having it removed.  I was pretty sure it was a cyst or other benign growth. A plastic surgeon was about to do it, but decided I really needed a CT scan first, to be sure what was under there…

Now we jump ahead to my move to Maui in March of this year.  I finally had health insurance and on my first visit to meet my doctor, I mentioned the bump. So I had an xray of my head that day, and she called me later, sounding worried. She said they needed to do a CT scan and that it was a “lytic lesion”, which could have many causes, but it means something is “eating away” at the bone. So, I have a CT of my head, and now she mentions she’s consulted an oncologist.

For someone whose daughter died from cancer less than two years ago, that is about the last thing I wanted to hear.

He or she (the unseen oncologist) recommends a CT of my chest, abdomen and pelvis, and what I understand, while I’m completely freaking out, is they think I’ve had cancer somewhere in my body (for over 3 years) that has spread to the bone in my skull. The doctor was obviously scared on the phone, and this is what worried me the most.  She wasn’t reassuring. She didn’t say this is just a rare possibility.  When I asked “but wouldn’t I have some symptoms if I’d had cancer for over 3 years that had spread to my skull??”, she said “Not necessarily.”  I told her my doctor friend had said there are many benign possibilities, and her response was “well, did you tell her it’s a lytic lesion?”

The BIG CAT Scan

CT scan, CAT scan,

CT scanner

I went for the big CT scan.  It took 2 intense days of waiting, with little sleep, terrifying unbidden images filling my head, of what my life would be like if I was told I had cancer somewhere that had spread to my bone.  Imagining what treatments I might have to go through, what would be the chances I’d be cured, what quality of life I would have, on and on. I do have a good imagination, though I was focusing on imagining my body whole, healthy, vibrant and living to be an old woman…

Finally the doctor called and told me there was nothing of concern in these full-body scans. But now they needed to do an MRI of my head, to get a more detailed image. I had an MRI done of my head, again waiting on pins and needles for a call with the results, and she tells me they still can’t tell what it is, but the possible diagnoses on the radiologist report include cancer, and also benign possibilities. Each test they think will give more information and rule out cancer, but each test shows a mystery.  All this time, I can hear the fear in my doctor’s voice, talking about what next test the oncologist recommends. 

Gratitude for my inner and outer resources

I am incredibly grateful for all the tools that I have: over 15 years of practicing Reiki and giving myself Reiki constantly during this time; years of practice remaining in the heart-center in the midst of chaos and fear; the aromatherapy, herbal, nutritional and homeopathic remedies I knew to use for calming my nervous system and clearing the radioactive dyes they injected into my veins; doing prayer and ho’oponopono constantly.   I am grateful for knowing to get help and support from others too – receiving acupuncture and craniosacral work, hypnotherapy and energy healing from my gifted and wise friend Kathleen, talking with family and a few close friends. I’m incredibly grateful for my partner, Zelie, who was with me every step of the way, offering to be with me for each appointment, listening to all my stories and holding me while I cried.

Fear of Not Living

I am grateful, because even with all these tools, I cried. A lot. Even with my own and others’ intuitive read that I did not have cancer and wasn’t dying, I was terrified. I was more frightened than I’ve ever been in my life. More off-center and filled with anxiety than I’d  been during the ten and a half months that Elizabeth had cancer, or even when she died.  I kept working with this fear, asking what was it I was so frightened of? It wasn’t fear of death. I know deeply that when it’s time to die, death itself is welcome. It was fear of not living. What terrified me most was the idea that I have so much left to do, that I haven’t yet fulfilled my purpose here, and I need many years still to do that.  I feel I’ve been preparing my whole fifty years of life (maybe even lifetimes) for what lies ahead, and I was afraid I wasn’t going to have that chance.

Of course, I did not want to have cancer either. Watching my grandfather, then my daughter, and now one of my closest friends go through treatment for cancer, I knew I could do it if I had to, but really. I was asking the Divine “Really? Can I please have a break?” I lost my daughter less than two years ago, I was still exhausted from my move to Hawaii, and I am entering what feels like the best, prime years of my life for my work serving others: writing, teaching, facilitating, doing healing work and bringing through the gifts that Elizabeth shares through me. I could not believe that the Divine plan was for me to go so soon, and yet, I didn’t believe that was the plan for Elizabeth, and she was just 22 when she died of cancer.  I knew that it was not up to me and my preferences. I kept doing The Work, inquiring within my heart about the truth of what I was believing, and on some deep level, I had to surrender to the mystery and the suchness (as my teacher Brugh Joy used to say).

I felt Elizabeth especially close throughout these many months, from April til early August.  The synchronicity of this was not lost. She had lymphoma, initially in her chest, which recurred in her brain. This recurrence was essentially untreatable, and my mystery bump was on my head, in a very similar place to where her tumor was, on the opposite side. (Interestingly, my bump had appeared some time in the months before Elizabeth was diagnosed with cancer.)  I sat with her as she had brain MRIs done, CT scans of her body, countless blood draws, meetings with worried doctors, and I could only experience that through my own eyes and heart, as her mother.  This time, it was my body we were talking about, my life, and it was a completely different experience. I feel that a large part of why I was going through all these tests and the emotions that accompanied them, was so that I could have a better understanding of what Elizabeth (and others facing a terminal illness) may have gone through.  Another part is to take me deeper on my own healing path, feeling and expressing layers of emotions and writing about some difficult aspects of my relationship with Elizabeth.

Direct Evidence of The Mind/Body Connection

I’ve long had an immense respect for, and direct experience of the mind-body connection. What happened during this time of such stress served to more deeply embed this in my being. I hadn’t had any pain from this bump, other than an occasional tenderness over the years. However, after I heard the possibility that it could be cancer, and I was so overwhelmed with fear, with my stress levels high, I started having pain in the area of the bump! I could feel the pain increase after I had a conversation with my doctor, and I could feel the pain decrease when I placed a tachyon directly over it.  The tachyon is a small disk that helps to direct healing energy to what it’s placed on. It also had an immediate effect of visibly shrinking the bump! I could feel my body relax as soon as I placed the tachyon, and seeing the bump shrink by the week also helped me to relax, so it worked in several ways.

Lab Tests to Rule Out Myeloma

Finally I had a new doctor who agreed that blood tests might give some information towards a diagnosis. Kaiser sent me an email with each test result, and with each one my heart would be racing as I clicked on the link to see the results. Almost all came back quickly and normal, (and I’ve never been so happy to be normal in my life!), until we were down to the one test for myeloma (bone cancer), which seemed to be the doctor’s biggest concern.  This one, of course, took many days, and the first of two parts came back normal, which had me sobbing in relief. However it was on a Friday afternoon that the last of the tests came in. I was so nervous – it felt like I was going to open an envelope that would determine the course of the rest of my life. The result showed something that I did not understand and didn’t know how to interpret!  I could not believe it.  I had to wait til Monday to receive an email response from my doctor that it was normal!  Finally, something in me shifted and I trusted what I’d been feeling, that I do not have cancer and my body is healthy.

There was one piece to complete however, which involved surgery (albeit minor), to my head. You may know that Elizabeth had brain surgery in July of 2012, to try to remove the tumor which wasn’t responding to chemo, and the surgery did not go as planned. Her brain swelled, necessitating a second surgery to remove part of her skull, and she then had a stroke. After a week in ICU following the surgeries, she came home to hospice. So having a bone biopsy of my skull was rather unnerving, but this was the way to get clarity about what is causing this bony growth.  (I’d been asking for this since the beginning of the tests and mystery, but that is another story.)

A Bone Biopsy and Flashbacks

The biopsy itself was fairly uneventful, with Zelie flying with me from Maui over to Oahu as that’s where they can do a CT-guided biopsy. They told me I wouldn’t have much pain afterward, even though the radiologist had to essentially drill a small hole into my forehead bone. The next day at home, as the local and sedative medications wore off, I started to have intense pain. Fear combined with pain makes it much worse, and because I’d been told not to expect pain, I was worried that something was wrong. We were also preparing for a hurricane that night, which only added to the stress… 

Elizabeth Blue, Elizabeth Meagher, hospice

Elizabeth liked ice packs on her head – this was when she was in hospice, not in much pain

Sitting with a frozen pack on my head and crying in pain brought me right back to when Elizabeth was having horrible pain in her head, when the cancer had come back in her brain, but before we knew that’s what was going on.  I finally took something stronger than a tylenol, along with many remedies to help reduce swelling and bruising, and to facilitate healing, including arnica, dandelion root tea, and turmeric, and was able to get some restless sleep that night.

Cancer Free

I received an email the next day, saying there was no cancer found! All they could say was that it was “reactive bone”, usually caused by trauma. So on one hand I’m back to where I started, with a bump on my forehead, no real idea what it is, and knowing that it is nothing to worry about, which had been true these past three years. On the other hand, I’m in a very different place than where I started: I have a new perspective on mortality and what it can feel like when you, or your doctors, believe you may have a terminal illness. I have a different appreciation for the amount of time we have here, and how precious each day is. I wish I could say that every day is beautiful and the whole world looks fabulous all the time, but that’s not quite it. I’ve always been grateful to be alive. I lost my father at age 3, and had a usually fatal illness myself when I was 4, so I’ve been blessed with a profound appreciation for the gift of life as long as I can remember. What has changed is subtle. It is slowing down, eating more croissants (cause we never know…), loving more, with greater compassion, and I hope, greater presence.

Lucia Maya, healing, heart

My new heart…

Almost two weeks later, I still have a bruise/abrasion (mysterious how it got there – it covers the bump, but it’s not where they placed the needle) in the shape of a heart on my forehead. It may go away eventually, but I feel like I now have a heart tattooed on my third eye, a daily reminder to see everything through the heart. And another reminder that my heart will continue to heal.

“Making You a Latte” – Poem by Elizabeth Blue

Making You A Latte – by Elizabeth Blue

latte, yoga, grief,

Latte made for Elizabeth by Sam

6.3.12
5-Close Corral Shift (at Time Market/Cafe in Tucson, AZ)

{One of Elizabeth’s last poems, written when she’d finished chemo, was in remission, and was just beginning to tell people that she’d had cancer. She had wanted to get through treatment and live as normal a life as possible, not having people pity her or treat her differently. This shows some of the sacrifices involved…and we discovered the cancer had returned only about a week after this.}

I’m making you a latte and I’m being paid minimum wage and you’re not going to tip me no matter how well I foam this milk.
You’re asking about our bagel selection and I’m making love in New York.
You’ve decided you would like a muffin, to go, and I’m editing my first thesis.
You’re in need of napkins and I’m being painted in Paris.
I’m staring out the window onto the patio and I’m crying.
You want ice and the ice machine hasn’t been filled yet and I’m getting married in the desert.
You want another latte and I’m crying wet hot embarrassing tears at 7:30 in the morning because all my yoga teachers are out there, on the patio.  And I miss them.
I miss them because I haven’t been to yoga since I started chemo and lost all my hair and confidence and beauty.
And yoga was my first love.
Even before Andrew.
And I miss it so much my heart aches and seeing the people who I practice with outside that window…they’re all together and smiling and happy and when they came inside they were all so excited to see me and they don’t know why they haven’t seen me in forever, because I never told them I was sick.
And they don’t know how much I miss them.  And their not knowing just absolutely breaks my heart.

I’m betting all the time at work.
I’m betting that the children I imagine having when I see young mothers come in, I’m betting that those (my) children are possible.
I’m betting that the weight I gain from pizza will someday melt away when I regain control and stop eating.
I’m betting that the hours I spend imagining the guy I like/love, riding by on his back are not wasted because someday they’ll make his eventual interest in me all the more exciting.
I’m betting that all the lessons I’m learning while getting paid $7.65 an hour are worth it, that I won’t forget them or this summer.

Elizabeth Blue © 2012

Update on NPR Interview

I promised the link to my interview on NPR, and here it is: Voices for the Cure on Arizona Public Media. Mark McLemore was a wonderful, thoughtful and sensitive interviewer, and I’m so honored to have the opportunity to share more of Elizabeth’s and my journey with more people.

Lucia Maya, Elizabeth Blue, Jade Beall, Elizabeth Meagher

Lucia Maya and Elizabeth Blue, April, 2012, photo by Jade Beall

NPR Interview – “Voices for the Cure”

A quick note:  I was interviewed for our local NPR station about losing Elizabeth, and our journey with cancer and death.  It airs today, January 10 at 6pm, Arizona time, and tomorrow, January 11 at 5pm.  If you’re in Tucson, Arizona, you can listen live at 89.1, or stream it here wherever you are: https://radio.azpm.org/kuaz/

Elizabeth would have been turning 24 this Sunday – it feels like an appropriate honoring of her to be able to share this now…
If you can’t tune in live, it will be posted on their website, and I”ll share that later. 

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

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.

Coming Home to Die

I heard an excellent story on NPR the other day, about How Doctors Die, and how even though the majority of people in the U.S. say they want to die at home, surrounded by loved ones, less than half do and most die in the Intensive Care Unit (ICU). In Tucson, where I’ve lived the past 8 years, only 10% die at home.  This is partly because when we are very sick, doctors are not likely to tell us the whole story, and we are not willing to ask the important questions – what are the implications of this treatment, what will be the quality of my life, how much time might this treatment add to my life, what are the risks and benefits…?

it reminded me of how difficult it was for the doctors to tell us what was really happening when Elizabeth was in the ICU.  She’d had 2 chemo treatments when the lymphoma had spread to her brain, that had not shrunk the tumor.  She’d had brain surgery to “debulk” the tumor, which had reduced the size of one tumor, though now we learned there were two in her brain, and probably more in her spine.  The surgery had increased the swelling in her brain, necessitating a 2nd surgery to remove part of her skull, and then a stroke left her paralyzed except for her right arm and head.  She was intubated, meaning she couldn’t speak, and it was so painful that she tried to pull the breathing tube out if her hands were free.

Elizabeth had told me clearly when going through her first chemo treatments: “Mom, I don’t want to go through years of treatment for cancer only to die of it. I don’t want to live like that.”  I looked at her and I said “you won’t”, knowing somehow, that it was true, she would not.

But the doctors were still coming to the ICU each day and telling us she could go to rehab, learn to walk again, she’d need radiation to her brain, a different chemo drug…and I was a believer still, not yet seeing what was in front of me. Powerless, and still hopeful. Around the 6th night she was in the ICU, in the hallway, our favorite nurse said to me “I heard from your friend that you’re starting to talk about hospice.” I was shocked.  That was the first time I’d heard the word used in relation to Elizabeth, and we had NOT started to talk about hospice! I was angry at her, felt violated and that she’d crossed some line.  Only later was I incredibly grateful for the one brave woman who would dare speak the truth.

The next morning, after some time had allowed this idea to sink in, I asked the oncology team to tell us what was realistic. Did hospice make more sense than planning to continue treatment? Only then, when confronted, did they say yes, hospice was probably the way to go, that the treatments being discussed weren’t likely to be successful. They also passed it off to Elizabeth’s specialist, who had never come to the hospital, saying he’d have to talk to us for the final word. He came that day I think, and sat with me and Greg, and told us that she could try more chemo, or radiation, but it would likely only add days or weeks to her life and he didn’t recommend further treatment.  There was no question in my mind that Elizabeth wouldn’t want that, and I didn’t want that for her either.  All I wanted then was for her to come home, be out of the ICU, in a beautiful, peaceful place where we could care for her ourselves.  Dr Miller also told us that if he let himself, he’d be sobbing along with us, but he couldn’t.  That he wanted to be the hero who saved her, and he hated that this wasn’t the way the story was going to end. I know he didn’t want to be there either, having this conversation. No one wants to be the one to tell the parents of a 22 year old young woman that she will die soon.

We still had to fight hard to get her breathing tube removed, as she had a hard time passing their breathing test, though she was breathing on her own. The ICU doctor was afraid they’d have to intubate her again, if she didn’t have the strength to continue on her own.  I knew she’d be fine, that she needed to get the breathing tube out, so we could take her home.

Elizabeth Blue, ICU,

Elizabeth in the ICU

Finally, after days of promises and disappointments, they removed the tubes (partially because her dad had a rare, but necessary, blowup at the ICU doctor). She breathed fine, and she could speak again! I then told Elizabeth what Dr Miller had said, that there were no more treatments to try and she could come home.  She looked at me and said, “I’m relieved.” I looked in her eyes and said, “I understand.”  Elizabeth said, “I’m so glad you understand! I was afraid you wouldn’t.” I told her of course I understood, that she had done everything she could possibly do, and I just wanted her to come home where I could take care of her, and she wanted that too.

She’d had a feeding tube in, and as soon as her hands were free, she tried to pull it out. I explained that she might not be able to eat, as we didn’t know if she could swallow still, and asked if she understood what that meant. The doctors advised against it. She said yes, she wanted it out, and got it most of the way before a nurse could help her. Once that was done, and she wasn’t attached to the machines, we arranged quickly with hospice for a bed to be delivered to our home, and she came home the next day, after 10 days in the ICU.

Elizabeth Blue, Lucia Maya, hospice,

Elizabeth at home in hospice

If that nurse hadn’t spoken up, if we had been compliant and unquestioning, if we didn’t have great family support, a friend who is a doctor…Elizabeth might well have lived her last weeks in the ICU, hooked up to LOUD, painful, machines, with ICU psychosis (an actual condition they acknowledge there) from bright lights 24 hours a day, nurses waking her up every few hours, not able to speak, eat, laugh or just be.

roses, altar, Elizabeth Blue,

roses on the altar

As it happened, she came home and lived two more extraordinary months. The most beautiful, grace-full, love-filled times I’ve known.  There was healing and completion in many relationships. Time with her sister. Visits and laughter with family and friends. Singing bowls played. Silence. Books read. Poetry listened to. Soft sheets. Daily massage. Cuddling. Favorite foods. Music of all sorts – from Graceful Passages, Beyonce, Ashanna and Wu-Tang Clan. Fresh roses and altars with sacred objects. Soft light, birds, flowering plants and trees outside the windows.  We had time to talk of fear, of death, of love, of acceptance, of regret and loss, and joy and peace…It was so beautiful. And I am so blessed to have shared that time with her, and so immensely grateful it happened the way it did.

If I’m very lucky, I will die as she did (except for the Wu-Tang Clan), surrounded by love, being loved, and being Love.

Elizabeth Blue, hospice,

Elizabeth and Lucia’s hands

Elizabeth Blue, hospice,

Elizabeth with her Grandma, at home

I recommend filling out 5 Wishes, a living will written in plain language, that gives great options for how you might want to be treated if you can’t speak for yourself. Take some time to think about how you want to live and how you want to die…