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.