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.

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…

Anniversaries

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

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

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

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

June, 2012 – A New Challenge Met with Grace and Courage

For two and a half months, from March to the end of May, 2012 all was well.  Elizabeth had completed chemo, and in April she and I were photographed together by a wonderful local artist, Jade Beall, who captured Elizabeth in her beauty, full of life, and the two of us expressing the love that we share. In late May, my younger daughter, Julianna, had come home from her freshman year at NYU for the summer, and it was a wonderful chance for the two girls to spend time together.  It turned out to be extremely fortuitous that Julianna was home for the summer, though we would not know immediately just how important it would be.

Elizabeth Blue, Julianna Meagher, Cup Cafe, Tucson, AZ

Elizabeth and Julianna at The Cup Cafe, June 7, 2012

By the beginning of June however, Elizabeth started having headaches, sometimes accompanied by vomiting.  At first we thought it was a stomach bug, and then it appeared to be a migraine. It truly didn’t occur to me that it might be something worse, as the PET scan had showed her completely free of cancer just 3 months earlier, and I had the impression that if she ever had a recurrence it would be years later, not months.

As her headache gradually grew much worse, she received massage, Reiki, craniosacral work, and acupuncture, but nothing could relieve the pain for long. On Friday evening, June 8, we went to an urgent care clinic, where they examined her and diagnosed her with “tension headaches” and gave her mild pain meds.  She moved into my guest house that night, as she couldn’t keep much food down, and was in so much pain and so light sensitive, she couldn’t even look at the screen of her phone or computer. I knew it was bad when she asked me to read and respond to her friends’ texts!  We were in touch with various doctors over the weekend, but all were assuming she had a migraine, (though she had no history of headaches), and trying to find a medication that would help.

Finally on June 12, Elizabeth’s doctor Ann Marie Chiasson, also a good friend, was in the neighborhood and stopped by to check on her.  She recommended we go to the ER to rule out meningitis because of neck tenderness, and we drove to a small hospital half hour away, as we knew there’d be no waiting there. They did a CT scan and we learned very quickly that there was swelling and a large tumor in her brain, about 7 cm by 7 cm.  They were concerned about seizure and stroke and prepared to transport her by ambulance to our local, larger, university-affiliated hospital, where she’d been treated before.

I was in shock.  I remember sitting outside and sobbing, texting all our family and close friends, including my partner who had left a few days earlier to be in Hawaii for 2 months. For the first time in my life I called my mother and told her I needed her and asked if she’d come right away. She said she’d catch the first plane and be here in the morning.  Something shifted in me then, letting go of the self that had been so independent, rarely asking for help, and knowing that that was no longer an option.  I needed help. I needed the presence and support of my mom, and was so grateful she was able to come.

While I was outside, Elizabeth told our friend Ann Marie that she was just worried about me, worried if I would be ok. I think some part of her knew, in that moment, that she wasn’t going to live long. Perhaps she’d known on some level since her initial diagnosis, and it appears that her soul knew from a very young age – the one who wrote poetry seems to have known…I, however, have such an optimistic nature that it can border on denial, and I believed that she would overcome this recurrence of cancer fully and live a long life. I didn’t (wouldn’t) consider any other possibility and it felt disloyal, and like a betrayal of sorts, to think otherwise.

Once at UMC, (she posted photos of the inside of the ambulance while riding to the hospital), Elizabeth was brought to a room, first with a roommate and her mother, who talked nonstop, then for an MRI to get a better image of her brain, and was finally admitted to a private room on the oncology unit (thank goodness), both of us getting to sleep about 1 am.  We were woken at 4 am by a neurosurgery resident telling us (with some excitement) that she would have brain surgery in a few hours to biopsy and diagnose the tumor.  Exhausted and frightened, we managed to get a couple more hours of sleep.  Elizabeth was still in pain, though finally with IV pain meds and steroids to reduce the swelling, it was less intense. At 6 am, an intern from the oncology team came in, examined Elizabeth and said it was unlikely she’d need a biopsy, as her lymphoma specialist seemed 99% certain it was a recurrence of the Non-Hodgkins B-cell lymphoma.  I don’t remember much of her reaction, though she did ask one doctor  her odds of surviving with the treatment they were discussing, and after hearing of one study with older men, who had about a 30% survival rate of 5 years, she was naturally very upset, talking of how little time 5 years was, and how could she do everything she wanted in such a short time!  She wanted to become an English professor, get married and have children, write memoirs…I was also upset, but tried to convince her of the positive aspects, that this was only one study, with older people who may have had other health issues, and that since she was young and otherwise healthy, those numbers didn’t apply to her.

Later that day Elizabeth nearly passed out, after standing to wash her hands, and I could feel her energy waning. When I texted some friends to keep her in their prayers, I said she was “fading in and out”. It felt like she was deciding whether to leave then, and the doctors said later that it was amazing she didn’t have a stroke or a large seizure.  She told me a couple of times that she did not want to live several years and be going through cancer treatment that whole time, only to die anyway.  I told her she would not have to do that, and that was true.

She moved through these days of uncertainty, pain and difficult news with incredible grace, courage, beauty, love and humor.  She was my badass, lovely, wise-beyond-her-years, 22 year old daughter. There is no one like her, and I miss her.

Elizabeth Blue, May, 2012

Elizabeth Blue, May, 2012

If you want to follow the process as it was unfolding in “real time”, here are the emails I sent family and close friends from the month of June, 2012:

6/13/12
Dear family and friends,

most of you already have heard that Elizabeth’s excruciating headache and vomiting of the last 2 weeks brought her to the ER yesterday. She’s now at UMC where she’s had a preliminary CT scan, MRI and right now a contrast CT scan, and it’s almost certain that the lymphoma is what’s been the cause of the pain. We’ll know more later today hopefully. There’s a possibility they’ll do a biopsy, but sounding more likely that they’ll get enough info from all these tests to determine with certainty what it is.

She’s finally on enough pain meds to get relief, and is in amazingly good spirits, with a great sense of humor and inspiring presence.

This is not what I expected or hoped to be writing today, as she was totally clear of cancer as of a couple of months ago, but this is what’s happening and I’m sure she will deal with it with the same grace, courage and perseverance that she has dealt with all this so far.

Thanks for all your support!

love,
Lucia

6/13/12
hi all,

looks like no surgery, they’re 99% sure it’s lymphoma that’s in a new place. they’ll do another (!) CT scan tomorrow of her whole body to be sure it’s nowhere else.  and then start her on a chemo regimen, likelyweekly, getting the drugs into the spinal fluid or brain directly.  And starting her on steroids daily too. A five month process. this is all preliminary.

love,
Lucia
6/14/12 to a friend
dear one,

Elizabeth is at UMC now, since Tuesday. They’ve found the lymphoma has spread to her brain.  I still can’t believe I’m writing this. They’ve started treatment with steroids and will add the heavy hitters today or tomorrow. She’s getting another CT scan this am to be sure it’s not anywhere else. Please pray that it’s very limited or even already gone!  She’s doing a bit better with less pain finally, but really drugged. My mom is here which meant I could go home and sleep some last night which was good.

E is in pretty good spirits when not in pain, with a sense of humor, amazing courage, good attitude and an incredible presence.  She’s looking at another 5 months of chemo, likely every week this time.

Sending lots of love,
Lucia

6/14/12
Hi all,

a quick update – some good news today: Elizabeth is MUCH better today – she’s not in pain and no more nausea or vomiting!  She looks like herself again, more color in her cheeks (she had none) and light in her eyes again.  The steroids they started her on are working to shrink the tumor or at least the swelling.  It’s amazing the difference and i want to thank all of you for sending so much love and healing energy to her, I know it’s helping!

The “tumor board” met this morning at the hospital and discussed her case, which is apparently a real blessing – all the best, most experienced folks from different departments weighing in and coming to a decision on the best treatment plan.  So, assuming that the tumor is only in her brain (they just did an abdominal CT which was excellent – no sign of cancer in any of her organs) and will still do an MRI of her spine to be sure so we should know that by tonight), we have a plan.   They will treat her with 2 chemo drugs, vincristine and methotrexate, plus ongoing steroids.  The chemo will be given IV into a port they’ll insert in her arm. and will be done as an inpatient over about 2 days, over about 6 months.  They said many people have an easier time with this protocol than the one she had been on, so that’s also good news.  A longer journey with all this than we expected or hoped, but it feels very promising to me today.

love,
Lucia

6/16/12
Dear all,

yesterday was so crazy I didn’t have time to write.  Plans (for how to administer chemo) kept changing all day, and finally Elizabeth received her first treatment late in the evening through her IV.  There was little sleep last night, so she’s resting now, and thankfully Julianna, my mom and Victoria are all here for support, to keep her company and all the logistics.

The news from the spinal MRI is unclear – there may be some lymphoma cells there, but they could also just be some spots that are nothing.  They are treating her the same in either case.  She will likely be here at UMC til Monday, as they need to watch her kidney function closely after the treatment, although they’re doing lots of good things to protect them, they are just being cautious.

Elizabeth is amazing.  She is beautifully navigating all this, with great questions for the medical staff, incredible strength and courage, wisdom beyond her years, and great patience.  She’s finally feeling well enough though to be getting impatient about going home, which is a good sign!  Getting rest here is practically impossible…

Thank you all for your love and support.  I’ll try to keep you all updated, probably less frequently now.

love,
Lucia

Elizabeth Blue, chemo,

Elizabeth preparing for first inpatient chemo, 6/15/12

Elizabeth Blue, chemo,

Elizabeth and Lucia as she’s preparing for first inpatient chemo, 6/15/12

Elizabeth Blue, Victoria Joy, UMC, hospital,

Elizabeth with her godmother, Victoria

Julianna Meagher

Julianna, Elizabeth’s sister, by her bedside, 6/15/12

Elizabeth Blue,

Elizabeth at the hospital, 6/15/12

6/17/12
dear M and D,(friends)

She is definitely in an amazing and incredible transformative process.  I have to say I’m seeing miraculous shifts and I do believe she is here to do some really important things in this lifetime, and it feels like it will be a long one.  I do hope I’m right!

thank you for your faith… all healing is welcome…

She should be coming home tomorrow, and then will have chemo every 2 weeks for 6 months…I am holding the vision that this will bring complete and perfect healing for her!

love,
Lucia

6/18 from a friend
Dearest Lucia,
With all my love and infinite blessings.
Elizabeth is very close to my heart!
Her radiance is incredible!
J. and I meditate together daily and always connect with her.
A situation like this is what brought me to my path… By totally lovingly trusting the radiance.
Opened all the inner doors the end of which I have not seen.

You convey so  beautifully the essence of Elizabeth’s state. Your love and her greatness shine through!!!
What are her dreams?
Know I am with you in and out!
I am praying right now… That what she is carrying be released…
Love you dearly.
My heart is with you,
M.E.

6/18 (to friend and teacher M.E.)
She had a dream in the hospital, just as she was waking – you were there and telling her that her assignment for the day was to be kind to everyone who walked in her door that day, and so she was…

Another night she had a wonderful dream/vision i recorded…something about being two different versions of herself, and knowing that she wasn’t supposed to be there in that room. and finally saying maybe she could integrate the 2 different aspects of herself, as we talked about it at 4 am….

This does feel very ancestral, the day of her fist diagnosis (11/4/11) was my (paternal) grandparents wedding anniversary, and my mother and stepfather’s anniversary, and the date of this diagnosis (6/12/12) was her father’s and my anniversary!  All the aspects of her family represented in the dates.

I’m headed to sleep, a very long day, but she’s home and I am too. happily. 

love,
Lucia

6/19/12
Hi all,

so Elizabeth is home, doing well, though really tired.  She had her follow up visit today with a bit more info: she will have another MRI before her next treatment most likely, scheduled for July 2 now, and if the swelling is down enough, the neurosurgeon will put a small “reservoir” in her head, where they can infuse the medicine directly into the tumor.  This addresses the issue of the chemo not being able to fully penetrate the blood/brain barrier. Plus she’ll receive some other medicine through an IV of some sort, maybe a PICC line, maybe not.. They don’t know how many treatments since it will depend on how she/her body responds, at least 3 months, possibly longer.

Today her blood work was excellent, with great blood counts and Sandy (her NP at the cancer center) was very happy! She hopes this bodes well for going forward as well…So far the major issue is being tired, which could certainly be from lack of sleep and being in pain for so long… Elizabeth continues to have no pain, and is overall in great spirits.  Trying to figure out what she can do, as far as work, school, etc… with lots of questions still.

I know this is a lot of detail, and soon I will not send these emails, but this seems the easiest way to communicate to this group what’s going on here.  I so appreciate all prayers, love, support and words of encouragement from all of you!

I fully trust that Elizabeth will recover completely, whole and healthy.  I hope you all hold her in that vision and see her completely well…

She continues to amaze me with her patience, courage, sweetness and thoughtfulness. More to come!!

much love,
Lucia

6/19/12 from a doctor friend
Lucia,

having experience w/ cancer patients thru residency, there is something special about them – there is something about cancer that i think burns away all the bullshit, and leaves people with who they really are. For most people – this is the crazy weird gift that cancer brings – they are better for having gone through the experience. the dross gets burned away, and all that is left is their real selves, their essence, their truth.

i knew this from doing cancer work before i even met you guys. and i cannot imagine how bright your daughter’s light will shine after she has been through this (again). it is not fair, and not right, but her gifts will come to so much fruition after passing through this fire. i believe that, i truly do. the core of her being is going to come through, and it is going to be amazing.

i love you.
R.

Jun 19, 2012  Lucia Maya wrote:
yes, doubt and uncertainty suck, as does cancer.  I’m sad she has to go through this, and then I also know it  is necessary and will be (another) amazing opportunity.  She was so amazing during the last round…I get sad if i think about her gifts not getting “fully” expressed, and have to remember that however long we live, that is our full expression. Easier in theory!

loving you,
Lucia

6/27/12
Hi all,

things continue to move forward, not as fast as Elizabeth would like, but there’s progress… the latest MRI showed the tumor has already responded to the first treatment and the steroids, so that’s very good news.  They are waiting until it’s a bit smaller though (hopefully before the 3rd treatment in 2 weeks), for the neurosurgeons to do their part, and insert an Omaya reservoir (sp?) in her head.  This will allow one of the medicines (methotrexate) to be given directly into the tumor site, and will be even more effective, and also will affect the rest of her body less, which is good.

So this Monday, July 2, Elizabeth will be at UMC getting her 2nd chemo treatment of this phase.  It involves about 24 hours of IV sodium bicarbonate to bring her urine to “basic”, ph of 7, and then the 2 medicines to treat the cancer, followed by another 24 or so hours of sodium bicarb and leucovorin (sp?), a “rescue drug” which will help to clear her body of these drugs.  So probably 3 days in the hospital.  They were planning to place a picc line to give one of the meds, but looks like it’s complicated due to her new vein structure (from the first tumor’s location), so some specialists will consult to see if there’s a solution, otherwise she’ll just get the medicine in her veins through an IV, as before.

She also had visits with 2 integrative oncologists this week, who both had recommendations for complementary treatments that will increase the benefits of the chemo and help alleviate some of the side effects.  She’s really bothered by the spaciness from the anti-seizure med she’s on, and the steroids are making it hard to sleep, with a super busy mind, plus other mood issues, so hopefully these new things will help!

Having my mom and Victoria here was wonderful, and then Greg (Elizabeth’s father who lives in California) was here until yesterday, which was great too.  Elizabeth has a friend from Seattle coming tomorrow for a few days, and it’s important for her to have support and company most of the time.  It looks like Tashe (my sister) and my mom will come out and stay for a week each while I go to work in Hawaii with Zelie, end of July and early August, which is a huge relief to me that they’ll be here with Elizabeth, and Julianna too.

Overall staying positive and optimistic, and some days are easier than others.   I am seeing Elizabeth completely healed and well, and living a long and fulfilling life!  I so appreciate all your love and support and prayers!  We are very grateful.

love,
Lucia

JULY, 2012 will be coming up soon…and next will be some of Elizabeth’s writings from this time.  Thank you for reading and joining me on this journey.

Elizabeth’s reflections: Carlo Rossi and Chemo

“There is a vitality, a life force, a quickening that is translated through you into action, and because there is only one of you in all time, this expression is unique.  And if you block it, it will never exist through any other medium and be lost.  The world will not have it.  It is not your business to determine how good it is, nor how valuable it is, nor how it compares with other expressions.  It is your business to keep it  clearly and directly, to keep the channel open.  You do not even have to believe in yourself or your work.  You have to keep open and aware directly to the urges that motivate you.  No artist is pleased…there is no satisfaction whatever at any time.  There is only a queer, divine dissatisfaction; a blessed unrest that keeps us marching and makes us more alive than the others.”  Martha Graham

 

“Allowing yourself to be vulnerable is one of the most attractive things you can do.” Rick Owens

Carlo Rossi and Chemo
by Elizabeth Blue

April 12, 2012
Sometimes I get the strangest, strongest desire to drink or eat or smell or whatever, something I used to drink or eat or smell all the time.  These are often things I don’t even like but because I get such a feeling of being in a previous place/time when I have the sensory experience or re-experiencing a past and familiar sensation I want this thing like I want bones because I want to revisit my life in that past moment where the original connotation occurred.
And this is an example that happened right now: here I am quietly tumbling to myself and: WHAT?  I crave Carlo Rossi Sangria?  My drink of choice ages 12-14?  Can this be real?
No.  Certainly not.
What can be real is that I crave to be in the same body, mind, place or mind-space as I was at those ages.  And to have the nowness of me in the perspective of then. 

Elizabeth Blue

Elizabeth – March 2012

 

 

 

 

 

 

 

 

 

It also reminds me of this time I went in to have chemo and I was by myself.  
By the way: chemo makes you extremely stomach sick and leaves a lingering metallic taste in your mouth that lasts for days.  At the time chemo is being pumped into your veins you can:
taste. the. chemo drugs.  
Yeah really.  I didn’t know that was even possible but then again what do I know about western medicine really?

Anyway, I was getting chemo and I walking around with my traveling IV hook up thing, which is on wheels to permit movement, and I came across a box with candy.  Being a lifelong lover of candy I selected for myself a package of Chips Ahoy cookies having no appetite for them (due to the chemo queasiness) I decided I would save them for later when I was high and hungry.  Good plan?  One would think yes, but no.

I bring the cookies home in their bright blue packaging and I can’t even look at them. When I accidentally drop them out of my purse I stare at the package on the floor, my stomach starts to churn and I stare and stare until I can convince my body to contain its innards.  And then I pick them up and put them in a drawer because:
THE COLOR BLUE OF THE PACKAGING IS A COLOR I RECOGNIZE AS EXISTING ONLY WITHIN THE TREATMENT CENTER.  
Seeing that color makes me taste chemo drugs and that taste has overpowered any childhood associations I have of liking these cookies.  
I remember those associations, Chips Ahoy cookies always came with pizza on pizza day and that was a big deal and I would eat them as slowly as possible to make them last as long as I could.  
But that doesn’t matter anymore to my brain.  What matters is chemo chemicals and their associations.
And now what I associate with chemo I do not want to put in my body because chemo tastes like poison.
You know why?
Because it is.  The poison that saved my life.  xoxox to Persephone and your pomegranates.  Winter is created but Spring is here.

This doesn’t make sense, I mean, my language if you’re outside of my head.  I’m just allowing myself the rarely indulged or afforded luxury of vomiting all over tumblr.  I mean, shhh Elizabeth, someone might even be listening.  I mean reading.
Ooops.

This is from Elizabeth Blue’s tumblr (blog) and more can be found here.  I am only posting ones here that are related to her journey with cancer, but if you want more of Elizabeth and her thoughts, loves, interesting obsessions (hairless cats, justice and fashion, to name a few)…see more at “Freshly Shaved Legs”