Tag: motherhood

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 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 her Grandma

Elizabeth Blue at home July 1, 2012

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 in her hospital room with our decorations

Altar in the hospital room

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

Elizabeth Blue, self-portrait in the hospital

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

April 23, 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 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

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 preparing for first inpatient chemo, 6/15/12

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

Elizabeth with her godmother, Victoria

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

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.

April 5, 2013
All that we love…

There have been 2 dates this past week that have felt quite significant. It was one year ago, on March 21, 2012, the first day of spring, that Elizabeth had what we had every reason to believe was the last of her 6 chemo treatments for lymphoma. It was a day of celebration – of moving out of the long, dark winter of chemo, and into the rebirth and new life of spring. In the months that followed, she was reborn, telling people of her journey with cancer, writing about it on her blog, going without her wig once her hair had grown in just a half-inch (“I know there is a part of me that knows bald can be beautiful.“), returning to yoga, getting a new job, dating a new man, a body-piercing internship (“I got a Piercing Internship today. I start Sunday. I’m so excited, I think I was born to poke tiny holes in people and then tell them how to heal them correctly.” June 1 2012), being photographed not just bald, but bald and naked…

Elizabeth Blue, 4/13/12

Elizabeth Blue, 4/13/12

Elizabeth Blue, 4/13/12

It’s still beyond my comprehension that almost exactly 6 months later, on September 23, 2012, Elizabeth died peacefully at home, having known for 3 months that the cancer had recurred in her brain, and knowing for 2 months that there was no more treatment, and that she would almost certainly die before winter arrived again.

Just past the 6 month anniversary of her death, I’ve been surprised at how the experience of grief has gotten both easier and at times, more intense. What is fascinating is how grief is alive, a kind of entity, with its own timing and its own movement, separate from me, yet weaving itself into my life. Showing up some mornings, and taking a vacation, perhaps, on the other days. Visiting elsewhere possibly? Perhaps I am sharing this particular grief with someone else, and it can’t be in two bodies at once? It does visit less, but when it comes it is much more powerful Some days I think of Elizabeth and feel simply joy and gratitude, peace. I feel at a distance from “the story” and from grief. And there are the days when everything I see, hear, eat, wear, etc, makes me think of her and the loss of her physical presence with such intense emotion, such depth of sadness…it arrives like a wave washing over and into me, embodying me, and I surrender, as long as it takes to come up again.

I had two months of being with Elizabeth when we knew she was dying, and I had time to say goodbye to her many times as she shifted and changed during that time, but the one who I’d known before that – that Elizabeth is the one I didn’t know I was never to see again, and that’s the one I miss the most. The one who told me stories about her friends, met me for coffee every week, talked about socialism and feminism and was outraged along with me about some injustice, made me worry about her choices in men, made plans for graduate school and buying a house in the desert, and loved me as only she could. I only recently started having the phenomenon of thinking of calling her to tell her about something I think she’d like, and then laughing at myself for it. I’ve had the awareness that some small part of me is still waiting for her return, as though she were just on a very long journey, which of course she is…

“What we have once enjoyed we can never lose. All that we love deeply becomes a part of us.” ~ Helen Keller

Coming next – emails from June, 2012, the next stage of Elizabeth’s journey…

March 26, 2013
The Mother and the Wise Woman

I am very aware these days of moving back and forth between two aspects of myself, two archetypes: one is the Mother, the personal self, the one who grieves deeply, who is angry and sad, who misses my daughter Elizabeth, who truly cannot comprehend that she could be gone, that she died. The other is the Wise Woman aspect, the one who is completely at peace, who knows that Elizabeth finished everything she came here to do, that she is at peace, that she was always aware on some level that she wouldn’t be alive very long and was prepared for death at 22; that she is communicating with us, teaching me, even more present and available to me now than she was in life.

I am so grateful for both of these selves. When I am fully in one, there is a witness self who can remember that there is more than the perspective I hold in the moment. I can see that if I didn’t have the ability to access, or simply remember, the Wise Woman, I could be in hell when the Mother is present, at least when she is deep in the grief process, but with the awareness that there is another one present, I know that whatever I’m in is not forever, and that makes all the difference. Even when the Wise Woman is fully present, I am grateful for the Mother aspect bearing witness, as she is the one who connects with Elizabeth as she was in body, who remembers her love, her attitude, her intelligence, and allows for the personal aspects to remain.

Sometimes I can move between the two in a matter of moments, as when I was working with a client the other day, and the Wise Woman self was present, working from a loving, heart-centered place, listening, and not involved in my own story. When my client asked about Elizabeth though, having seen a photo, or read about her, I moved into the personal Mother aspect, talking about her, allowing the tears to come, and then shifting back to the transpersonal. Since Elizabeth’s birthday on January 12, I am more often in that place of the personal, with tears close to the surface much of the time. I just received a text from someone whose young brother in law is in coma, and she was offering her sympathies about Elizabeth, and that made me burst into tears…and then pause, center, shift, and I’m back in this place of peace and gratitude.

I am so grateful for the years of practice of heart-centering. I know that has made an immense difference. That from the heart center, I don’t get pulled back and forth, that the heart-center can hold all the aspects of myself, all the archetypes who are present. I am blessed to have wise and wonderful friends who listen and guide me. I am grateful to have time and space to explore these places, to go deep into the Mother self, allowing the grief to move through, and to have access to the Wise Woman archetype/self, finding the gifts and the gems within this process, knowing that there is more to come, knowing from experience that the heart-opening pain brings immense joy and gifts beyond our imagination.

January 25, 2013
Elizabeth Blue’s 23rd Birthday

is tomorrow. Saturday. January 12, 2013.

She left a lasting legacy of beauty.

And love. So much love.

I know her birthday will not always be so completely intertwined with sadness and longing, but I imagine it may always be bittersweet. Sweet with the gift of knowing her for 22 years, hearing her laugh, seeing her beauty, feeling her love. And yet missing her tangible, bodily presence.

I am gathering with my mother, sister, brother and close friend/godmother of Elizabeth for these days preceding and bringing us to Elizabeth’s birthday. I knew in my head and my heart that this would be, and is, one of these heart-breaking-open times, her first birthday without her here to celebrate in person. But we are finding ways to celebrate and honor her.

We’ve been planning our tattoos, my sister creating a heart, with 2 Es woven into it, just as she is woven into our hearts. Preparing a tattooing ritual in her honor, in sacred circle, with food, flowers, candles… We each celebrate and mourn in our unique ways, some quietly, some alone, some with beloved community, some unaware of what we do until much later – all potent and important, all seen and acknowledged by Elizabeth herself. I know she is close by, I feel her presence today as I buy flowers for her, eat some of her favorite foods, walk in the Berkeley Hills with my mother, awed by the extraordinary beauty of this place, and taking Elizabeth with me, everywhere I go.

Happy birthday my beloved daughter. I trust that you are walking in beauty, surrounded by beauty, and feeling a radiance of love from all of us who knew you.

Elizabeth Blue and Lucia Maya, 2010

January 11, 2013
Lucia’s emails about Elizabeth – Jan and Feb, 2012

Surprisingly, there are only a handful of emails I wrote during the initial 5 months of Elizabeth’s cancer treatment.

Even on February 4, 2012, when Elizabeth had the PET scan results that showed she was in remission after only four chemo treatments, which we were overjoyed about, I only mentioned the news in an email to one friend. I know I made phone calls to a few close friends and family, but I think I was so certain that she was going to fully recover, that there was little drama. That day of “the best possible news”, I well remember receiving her call during a Reiki class we were teaching, and how excited she, Zelie and I were, and that we took her out for a spontaneous and wonderful celebration dinner. It felt like there was a new beginning, another chance at life and for greater healing for us as a family, and we were all three part of it and so delighted!

And in early December there was a frightening and emotional episode when she developed a cold and a fever. In ordinary life this was the kind of cold she might have only mentioned in passing, but with chemo, her immune system was so compromised, her white blood cell count so low, that a fever could actually kill her.

She and I went to the ER as instructed, on a Thursday night, and were shown to an exam room immediately, as they do not want someone receiving chemo to sit in the waiting room exposed to all the sick people there! But after the initial hurry to get her in, everything moved VERY slowly. She had a fever, which meant she needed to be admitted, and needed IV antibiotics, but once they had given her her first dose, they were in no hurry to admit her. We ended up spending the entire night waiting in that ER exam room, not a great way for her to rest and recover from being sick, and for me it meant alternating sitting on a hard plastic chair and searching for someone with the authority to get her upstairs to a room.

We did have some great, intimate conversations that long night in the ER, and during the very first days she was in the hospital as well, while we waited for her to have her biopsy to diagnose the lymphoma. There’s something about the isolation, the emotional intensity of waiting, the exhaustion, the drama of being in a hospital, and the real possibility of death at the age of 21 that can bring about that openness, that intimacy, sharing of secrets never spoken of before. I learned the dramatic story of how she lost her virginity, which I was almost as upset about as the fact she was being diagnosed with cancer…In the summer, when her cancer had recurred, she amended the story and shared a slightly less dramatic version, and in this truer one, she took responsibility, rather than blaming others for the circumstances. She amazed me with her integrity, intensity, courage, her youthful foolishness and survival.

Once Elizabeth was admitted and settled in her room, I needed to go home and sleep – I do NOT do well without sleep. She did not want to be left alone at all, and finally she agreed to my getting a few hours of sleep at home and returning that afternoon. Then I had the dilemma of what to do about a class I was scheduled to teach with my partner that night and the next day. I didn’t realize at the time how frightened Elizabeth was, and I wasn’t there when one of the doctors told her she could die from this fever, which fueled her anxiety. This was one of many times when I felt pulled between my commitments, the needs of my partner and the needs of my daughter(s). In trying to please everyone, no one was happy. I didn’t follow my own instincts and spend as much time as I would have if I had simply listened to my heart. As it turned out, her ex-boyfriend was in town, and ended up spending as much time as he could with her, which seemed to be a great solution, but months later Elizabeth was still hurt and angry with me for “appearing relieved” that he would spend that second night at the hospital with her, even though I was there two nights and most of the three days she was being treated…We had the chance to talk about this later, during one of our days spent together while she was getting chemo, which involved lots of separate appointments and lots of waiting time, which gave us lovely opportunities to talk, listen, and heal old (and new) places in our relationship that were tender with woundings.

We had a complex relationship, as most, if not all, mothers and daughters do. She was my adored first-born, who never wanted to share me, not with her father, her sister and especially not with Zelie, my partner. And then she was fiercely independent and strong-willed, even calling herself “bratty”. The year of Elizabeth’s living with cancer served to bring us so much closer, giving us opportunities for healing between us and for Zelie and Elizabeth, in ways I had only hoped for.

Lucia’s birthday dinner with Lucia, Zelie, Julianna and Elizabeth – 12/24/11

Here are the emails to (and from) friends during these months of Elizabeth’s first round of treatment for lymphoma, which give a glimpse of what our life was like during this time:

1/5/12 from a friend, A.M. :
I love Elizabeth and what she is doing. She is so honest with her process. How tough it must be, I can only imagine. To have such an illness, with a great prognosis but still uncertain in a little way. God, I pray that it shrinks and goes away. Her wig looks good. She actually looked great the other day. She is so clear about the fever (the “neutropenic fever”, which I wrote about above), how to manage it,…. And to be the Mama in this, my heart goes out to you Lucia. How you are keeping it all together is quite amazing.

Let me know if I can be of any assistance.

Love, A.M.

Elizabeth with my mom in Sedona on a family vacation – January, 2012

Elizabeth Blue at the Grand Canyon – January, 2012

1/9/12 email to Elizabeth (a friend):
Dear Elizabeth,
Elizabeth is doing really well – she’s had 3 chemo treatments, hopefully halfway through! She’s doing amazingly well, going to school, appreciating being able to continue with her classes and spending time with friends. Her prognosis is excellent, and the tumor has already shrunk considerably. It feels like a positive experience mainly, though challenging for sure, giving us some great opportunities to heal old wounds… it’s still also hard to believe this is what it looks and feels like to have a daughter with cancer. It’s still somewhat surreal…. I so appreciate you holding her and us in your heart and your prayers!

1/1912 to Alexandra (my stepmother)
thank you so much for asking! and for your support, it makes a huge difference to me to hear…

The day went well – blood work continues to look great, the NP is very happy with the results. E will have a PET scan before her next (5th) treatment, which will determine if she needs a total of 6 or 8 chemo treatments. If 6, she could be done as soon as early March! She is looking forward to being “done” and also realizing that it will be months before she is feeling all the way herself, with hair even beginning to grow in, appetite, etc… and of course the rest of her life with this somewhere in the background.

Her attitude is really great though, very positive and quite appreciative (mostly…) of the support she’s getting. She’s having to learn how to be less perfectionist about her school work (tho she did get 3 A’s last semester!), to prioritize her health.

The treatment itself went fine, long and uneventful! And though I’d offered for E to stay here last night, she opted to sleep at home, and I imagine she’s still sleeping! I cleared my calendar for today and tomorrow to help if needed, so we’ll see.. seems when I make myself available she doesn’t need me so much, and only when something comes up where I’m not available does she feel very hurt and that she’s not my priority…but we’re working this dance out.

love, Lucia

Grandpa Paul visiting Elizabeth – February, 2012

2/3/12 to Sally
I’m waiting now while Elizabeth has a PET scan, which will tell us if she needs 2 or 4 more treatments. A bit stressful!

She’s ok physically, but stressed, not happy right now, not getting support at all from her closest friend nor the guy she’s been dating. We are going Monday for a photoshoot with Jade Beall. I want to document and honor this time of transition, so I’m glad she said yes. (This ended up being postponed til April.)

It’s really hard today, I’m just close to tears all the time… (my partner and I were really stressed and arguing) We are bringing out so much old anger, resentment in each other… I’m so tired and needing support, feelings hormones swing like crazy, and feeling really vulnerable. I’m tired of not feeling supported for who I am, as a mother, etc..

Sorry for the download, just needed to release some. Thank you for listening.
love you too. Thanks for being.
Love,
Lucia

2/4/12 to Kathy (a friend)
so nice to hear from you after a lovely day of teaching Reiki, and really good news about my daughter’s health – the cancer is totally resolved!

The tumor was right near her heart, on the right side…sure feels like we’ve been through a dark and scary time, though transformative and healing, much like a sweatlodge!!

love,
Lucia

2/11/12 to Matthew (a friend)
I can’t remember if you know even that Elizabeth was diagnosed with lymphoma in early November? It was a huge shock, AND she’s doing really well, with 4 of 6 chemo treatments done there’s no sign of active cancer on the PET scan last week! So she has 2 more treatments and though they’re intense, she’s been doing quite well overall.

She lost her hair, has a great wig! Still going to school at U of A, hanging out with friends, etc.. trying to live as normal a life as possible. It’s been quite a journey for us all, and a true opportunity for healing among her and me and Zelie. Some huge shifts have happened and I believe more are in the works!

Otherwise, things are moving along, with lots of work right now after a really slow couple of months – perfect timing really, while dealing with E’s first couple months of treatment, etc.. The universe truly takes care of us!

love, Lucia

Elizabeth’s March trip to NY to visit her sister, Julianna, and friend, Andrew:

Julianna, taken by Elizabeth on her visit to NY – March, 2012

Elizabeth, taken by Julianna in NY – March, 2012

Andrew and Elizabeth, while visiting in NY – March, 2012

3/8/12 to Alexandra:
It is an exhausting journey, but hopefully will be done soon!

Elizabeth’s next (and last) treatment is set for the 21st, but could be moved to the 28th depending on her white count. (Her white count was so low that two of her treatments were delayed til they came up to a level that wasn’t so dangerous, which caused quite a bit of unhappiness and tension, as Elizabeth wanted to be done, and the not knowing was very difficult.) She is flying to NY next week to spend with Julianna (her sister), as they have the same week off – I’m really happy they’ll be together and that she’s feeling well enough to do that. E does have a small blood clot in her arm, near where they’ve been giving chemo, but they’re not worried, just recommending heat and baby aspirin… I’m a little worried, but hope it will resolve soon.

much love,
Lucia

Chemo drugs for Elizabeth’s last outpatient treatment – March 21, 2012

The gift from the nurses at Elizabeth’s last chemo treatment – March 21, 2012

December 30, 2012
A Letter to My Daughter – by Elizabeth Blue

November 20, 2011

A letter to my daughter.

The daughter I never had and may never have because my ovaries may no longer be functional when I am finished with chemotherapy treatment. (In 6 months) *hopefully.

Dear Daughter,

I am sorry. I am sorry I killed you, I am sorry I killed your potential to be born before you were even conceived. You see, when I asked the doctor about saving some of my eggs so you might come into being one day I was thinking of your birthday. I was thinking of the day which passes, each year of my life, when your birthday happens, or would happen, and I don’t even know it. I don’t even know yet to celebrate, or to not celebrate your birth or lack of birth, death day. I was thinking about the day I’ve always assumed occurs once throughout the year, without my knowing, that would one day be known to me as the most special, most important day of my life. Your birth.

When I asked him about this, asked Dr. Miller about saving my eggs, he rustled up his eyebrows together and said “Honestly, if we took the time to do that, I don’t think you would make it.” I chose my life over your potential life and I hope you don’t blame me, my shining star. If I had waited to save half of you from my own body before beginning chemo treatment I may not have lived to see you fertilized. I am sorry. I am sorry for both of us.

So, to my daughter, my shining star, who in my own mind I’ve named: Cricket Chloe Benjamin Blue. C.C.B.B. I loved that name. Dear Chloe, I do love you.

You would have been like me, with long blond (or brown) hair. You would have made me laugh and dance with you all the time and forget my own fears of inhibition. I would have loved you as my mother could not love me. When I had to run away from life, from my husband, from my country, from my family, from my mother, from my sister, from my father, from my language, from my religion. When I had to run out on all of this (it is inevitable) I would have done what my mother could not or would not do: I would’ve taken you with me and loved you as part of my own body. I would have dressed you in white dresses and brushed your hair every morning before school while you ate toast and gummy vitamins and drank your orange juice. I would have braided it for you every night so it would be curly, or crinkled or straight, or however you wanted it. I would have loved you regardless. I would have planned my outfits to compliment yours and bought you a kitten on your birthday.

Dear Daughter of mine,
I would have cooked you roast vegetables and tofu (maybe even chicken if you wanted it) and salad for dinner and let you have gelato for dessert. I would have taken you to Mexico and Europe and Guatemala and taught you to hold fast on the back of my motorcycle and trained your cat to ride with us. We would have gone to music festivals, just us and danced and danced. I would have taught you how to make cocktails and how to cure mommy’s hangover at seven.

I would always let you run outside to catch the ice cream truck and followed quickly with cash in hand.

When I designed clothes, I would ask for your advice. You would have been my light, my pride and joy, my piece of myself manifested in the world as a self creating creation from birth. You would would have been my goddess and my queen, my legend and my life.

I also doubted having you, before all this. Children are a deficit. Expensive, time limiting, and like I’ve often said, they get in the way of everything I love. Maybe I would need to change what I love. What I love now:
Shopping
Sex
Eating dinner in restaurants
School
Sleeping in
Going to bed late
Smoking cigarettes
Smoking pot
Spending an hour to get ready to go anywhere
Petting my cat
Writing
Etc.
Etc.
These things can all be made more difficult or more complicated by the presence of a child. I doubted having you for all these reasons. And today I still do.

You might, after all, still be an option.

Love,
Mommy

© Elizabeth Blue – 2012

December 15, 2012
The Ranges of Grief

Right now I’m feeling energetic, hopeful and enthusiastic about being alive, and what’s to come. A few days ago was one of the most intensely emotional days I’ve had, ever. So many tears, such depth of sadness, to the point I couldn’t really use my left brain at all, couldn’t write, could just barely find my center… And while intense emotion doesn’t bother me in itself, I realize the fear that comes up is “what if it’s permanent?!” What if I’ll never be able to think clearly, get grounded, look at anything in my house without being reminded that Elizabeth is dead, and just keep crying all day…Thank goodness some part of me could see outside of this place just enough to remind me that nothing stays the same forever. Nothing. I believe whenever I’m in something that is uncomfortable, the real fear is that I don’t know how long it will last. The not knowing is the hardest part. That’s where faith comes in – trusting that this too shall pass, and even if it doesn’t, if I question my beliefs (i.e. is that true? can I absolutely know it’s true?), I realize I’m fine.

I’m learning that grief is so many things. It is sadness beyond imagining. It is crying so hard I feel like throwing up. It is rage so great I want to break glasses, plates, and big glass doors (haven’t done that yet!). It is memories so sweet and so sad at the same time – like on Thanksgiving, remembering Elizabeth sitting at the table with us last year, having just had her first chemo treatment, with her usual attitude – sweet, polite, gracious, and also a bit above us all, in her ladylike, queen Elizabeth stance. Remembering her making an entrance, so beautiful you’d never know she had cancer or was going through chemo. I’ve had Thanksgiving dinner with her every one of her 22 years, and this first one without her was hard. Grief can also be this comfort I feel today, trusting that all is ok. It can also be delight, warmth in my heart from small things, like a compliment or an invitation.

On the days when I wake with that depth of sadness, it feels like I might as well just embrace it and do some of the things I know would bring it on anyway. One day last week that meant attending to a few details like the simple act of finally cancelling Elizabeth’s Spotify account. It was heartbreaking – it also meant logging in to her Facebook account and then I was compelled to read her wall, and I felt her reading it, as though I was seeing the posts through her eyes along with my own, seeing all these diverse friends, parts of her life I wasn’t part of. At the same time, I couldn’t feel her presence around me as I usually can. Everything felt so close, so inside me, that I couldn’t get any perspective. Today I can see the same things, the photos, her clothes, and not be deluged with tears…so much is grace.

The tears, the sadness, the gratitude and the excitement – I never knew grief had such range.

December 13, 2012