Tag: positive attitude

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
My Wish For You

My Wish For You, written by Elizabeth Blue, age 14, in 2004.

March 11, 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
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
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
Reflections on the early days of Elizabeth’s cancer diagnosis

I am surprised as I look back, at how few emails I sent out last November and December (2011) to my family and friends during Elizabeth’s early days and months of dealing with cancer. There was relatively little drama going on, and we both tried hard to keep our outer lives looking relatively unchanged. We were both so certain that she would be fine, would fully recover as predicted (85-90% chance of full recovery) and live a long life, that we really took it in stride (and perhaps were in denial to a degree) and wouldn’t allow ourselves the possibility of this being the last year of her life.

I’ve been thinking all this time that it was mainly Elizabeth who didn’t want her life to change, she didn’t want people to know, didn’t want people to worry, pity her, treat her differently, have negative thoughts that would impact her energetically from a distance…as I reflect, I see that I was very much aligned with Elizabeth, not simply supporting her, but really not wanting the attention for myself either. I didn’t want to be pitied, to have the negativity I imagined coming from others, to be judged. I watched my own judgements come up around cancer, as I imagined what others would be thinking – it’s always our own thoughts if we are truly honest. I became aware of unconscious beliefs I held: that people with cancer hadn’t made healthy choices, either physical or emotional ones; that the parents of children with cancer were somehow responsible; that there was some shame in having cancer, or having a child with cancer. It’s hard to even write this now, as it no longer feels true.

I remember when I was doing Reiki as a volunteer at the local hospital in Tucson two years before Elizabeth was diagnosed, synchronistically working with people with cancer in the same units where Elizabeth would be a patient a short time later! Some part of me was guided to volunteer there – not only working at the same hospital where she would be, but working with patients with cancer, including children, young adults her age, and people in the ICU. I’ll never forget the first time I encountered a baby, just 2 months old, being treated for cancer. As I watched the thought appear: “this baby is too young to have done anything to cause his cancer”, I realized painfully that that was the belief I’d been carrying for so long, that people with cancer are responsible for their illness through the choices they’ve made. Once it came to consciousness, I was able to work with it and that belief changed.

Over time, I’ve come to see that we can make choices that may make it more likely we’ll be healthy, but they will not change whatever our soul’s destiny is. I believe we have some free will, but I also believe we are not the ones in control. I believe anytime we have some major shift, such as a cancer diagnosis, it is a great opportunity to look deeply at what is not serving, how I am not aligned, not following my heart, and dive deep into healing from that place of awareness.

Elizabeth was very private during her fist round with cancer, from diagnosis in November 2011 to her last chemo in March, 2012. She only told her closest couple of friends and promised them to secrecy, not even telling the man she was dating. Her greatest concern, besides surviving, was living as normal a life as possible, and that no one treat her differently. She completed her junior year at the University of Arizona in the Honors College as an English/Creative Writing major, taking a full course load and getting straight A’s both semesters during her treatment. She did tell her professors, as she had to miss some days of school with each chemo treatment and occasionally for doctor appointments or tests.

Elizabeth Blue with her beloved cat Blue, with her own hair

She grieved deeply about losing her hair and some of the most dramatic and emotionally challenging days were spent trying to find her the PERFECT wig that looked so much like her real hair that not even her lover knew she had lost her hair. We spent several days searching every wig store and cancer organization in Tucson with no success, as most women who lose their hair are over sixty and don’t have long, brown hair with bangs! We then spent hours online before finding the website that sold (expensive) wigs in styles for younger women, and made of real hair, that looked very realistic. It also, of course, had to arrive before she lost all her hair, which she’d been told, accurately, would happen fourteen days after her first chemo.

Elizabeth – as beautiful as ever, with her wig

She did not write publicly and barely even privately, about having cancer until she completed her treatment and was declared in remission.

I found only a few emails I wrote to individual friends and family from that early time. I share them here.

November and December, 2011

11/13/12
to Alexandra
yes, we are feeling quite optimistic as well. so glad she’s had her first treatment, and today is feeling well, though still very swollen. she was in the best spirits I’ve seen her all week, and tomorrow we go wig shopping, so we’ll see how that goes! she’s determined to have hair that looks like her own, but we’ll see once she loses it if she’s as attached as she is now…

my main worries right now are to do with insurance and financial, but I’m just trusting that it will all work out. the wig may be a big expense, but we’ll see what we can find! 1st stop is the American Cancer Society, as they sometimes have gently used wigs free…
much love
L
11/19/11
to a friend who is a social worker at the Cancer Center:
thanks for writing – yes, that is my daughter Elizabeth, who is 21 and was diagnosed a week and a half ago with non-Hodgkin’s lymphoma. It’s been a huge shock, of course, and she started chemo last Friday, and is doing really well. The prognosis is excellent, with only one lymph node affected (mediastinal), and she was back in school 2 days after chemo…

I think the emotional part of it is immense and is hitting each of us in different ways – it’s strange since right now things seem fairly normal, but at the same time not normal at all! Elizabeth’s hugely concerned with the fact that she’s going to lose her hair soon, and doesn’t want her friends and everyone in her life to know that she has cancer – she’s aware also of how attached she is to her looks and is already able to see some of the gifts and benefits of going through this, which is amazing…So she’s ordered some very expensive wigs and is hoping one will look real enough to be able to go to yoga (unfortunately it wouldn’t stay on well enough, and she chose to forgo yoga, one of her great loves, during her treatment, rather than go to class without hair) and go dancing in. I’m hoping both that she’s going to feel better with that solution, and also that she can make peace with losing her hair and be ok with that for this period of time…and not need to hide any part of herself, moving into a deeper experience of life.

12/2/11
Hi everyone,

thank you all so much for your prayers, good wishes, emails and phone calls – they are hugely appreciated and I believe making a real difference.

Elizabeth is sleeping next to me while receiving her 2nd chemo treatment. She is doing extremely well, both in terms of her past three weeks with relatively few side effects from the treatment, and in terms of the measurable results we heard today. The blood work from today showed a huge, wonderful response to her first treatment, the doctor and NP who are working with her were very pleased. The main indicator of the tumor has already decreased to normal levels, (meaning that they are certain the tumor has already shrunk considerably) and all her blood counts are normal or above normal, which means her body is not only responding well, but also her immune system is strong and healthy.

She has mostly felt well, with some fatigue and not great appetite, but she’s managed to eat well, getting back to her usual weight and looks wonderful.

She is hoping all this means she may have only a total of 6 treatments, as they’d said 6 – 8, and no radiation, which is a (small) possibility once the chemo is done. She is already doing some wonderful writing about all this…and continues to have a great attitude, seeing this as a rite of passage, which is amazing to me. (Seeing it in other ways as well, i know!)

Please continue to send your positive thoughts, prayers and energy. Thank you.

much love,
Lucia

November 27, 2012
My emails the first week of Elizabeth’s last year: November, 2011

These are the emails I sent to family and a few close friends when we were in the first week of discovering that Elizabeth had cancer.

Saturday, November 5, 2011

Hi all,
I am writing because Elizabeth is in the hospital today, waiting to have a biopsy on a mass that is in her chest. She’s in great spirits, with a positive attitude and just mainly having a hard time waiting for results, and wanting to be home. She’s been having swelling in her upper body, and some pain, and for a few weeks no one could figure out what was going on, so it’s nice to have some of the mystery solved at least. We are grateful that Ann Marie (our family friend and Elizabeth’s integrative doctor) is close by to support us in this process. We don’t know what it is, though it’s about the size of her heart, and we are hoping that it’s a benign tumor that can easily be removed.

I am asking you to hold her in your prayers, asking for the most benevolent outcome, whatever will serve her soul’s highest purpose…

Elizabeth feels strongly that she doesn’t want people to be worrying and would like to keep all energy as positive as possible. Thank you!

love,
Lucia

Sunday, November 6, 2011

Hi everyone,
here’s the latest update – Elizabeth is scheduled for surgery tomorrow afternoon (Monday).

She asked that we all pray for a miracle, that the tumor be benign, that it be easily treated and removed. All prayers, love and good wishes are welcome!

Thank you thank you thank you.
love,

Lucia

Thursday, November 10, 2011

(to her acuptuncturist) Elizabeth has a large mass in her upper chest, right side, in front, wrapped around her vena cava. She was at UMC til Tues eve, after they did a biopsy and confirmed the diagnosis of lymphoma.

today she was supposed to have a port inserted, to start chemo tomorrow at the cancer center, working with Tom Miller (we haven’t met him yet but the Fellow who works with him, Ursa Brown, followed E at umc and she’s great – he’s supposed to be the best in the country for lymphoma, and there are some integrative oncologists there as well). they couldn’t do the port due to the location of the tumor, so had to do a picc line instead. she’s doing mostly really well, dealing with the pain ok, and emotionally mostly pretty well… with some meltdowns too. we’re all in shock and moving thru our emotions as best we can. I’m feeling my way thru how much to take care of her and how much to let her be independent, which is tricky. but she’s pretty clear about what she needs and so far i’m comfortable with supporting her in all those ways.

energy and prayers are welcome. i know there’s a naturopathic oncologist in town, but haven’t gotten that far yet. it feels like doing the first chemo is primary, and hopefully will give some relief from the symptoms, esp the swelling, and then i can begin researching complementary things. also our integrative md friend is working on those angles too…

L

Saturday, November 12, 2011

Hi everyone,
thanks so much for your emails, prayers and love.

It’s been a busy week, with lots of tests, iv access line placed, etc…Friday, yesterday, was packed: we met Elizabeth’s main doctor, and the final pathology report confirmed what they’d believed- “large B cell non-hodgkins lymphoma, mediastinal mass” which means a type of lymphoma that’s located in her mediastinal lymph node, right in the center of her chest. The mass is pressing on the a major vein, so she’s continuing to have lots of swelling in her face and neck, which is the hardest thing for her right now. The cancer is fast growing, but not spread anywhere else, both of which are good, as it is expected to respond well and quickly to the chemo medication. They did a bone marrow biopsy yesterday as well, but they are not expecting anything to show up there.

Elizabeth started chemo yesterday too, with lots of additional meds to help prevent side effects. They stopped partway through, as she had a slight reaction to one of the drugs, which is very common. Today she’s receiving it with no problem, sleeping deeply. She will receive treatment as an outpatient every 3 weeks, and we’ll see how she does with the side effects, hopefully she’ll feel great and be able to go to school.

Greg (Elizabeth’s father who lives in Berkeley) has been here since Weds and Elizabeth now has a really clean home, with food and clean laundry and filled with love. It’s been great to have his support for her.

I’m also so grateful for all Zelie (my partner) is doing – taking care of me, our animals and our home, as well as being with Elizabeth…

love, Lucia

November 4, 2012
Out of the Blue

On Friday, November 4, 2011, my world completely changed. My older daughter Elizabeth, 21 at that time, called me as I was finishing a qi gong class at home. She was in tears, having trouble breathing and said something was wrong, she was in so much pain she was headed to the Student Health Center again. I knew it was serious, as this girl doesn’t cry, and has a very high pain threshold. I immediately said I’d meet her there, jumped in the car and tried to center and calm myself as I drove. As I walked in to find her, the kind doctor was telling her to go to the ER at UMC. We asked if she could go home, drop off her car and pick up a few things, and he said yes, but not to delay. He also called ahead and made sure she knew to tell them she was having chest pain, so she’d be seen quickly. Apparently he had a very good idea that she had mediastinal non-Hodgkins lymphoma from looking at her, as her face and neck were quite swollen, and that a large tumor wrapped around a vein was causing the swelling. She’d been having pain in her right upper chest for weeks that another doctor had been dismissing as allergies, and treating her with prednisone.

We didn’t learn the exact diagnosis until after her biopsy on Monday. However within hours of arriving at the ER, her chest x-ray showed us a large mass in her chest, about the size of her heart, just to the right of it. It was shocking to see. Elizabeth was healthy – she’d rarely been sick, had been treated with homeopathic remedies most of her childhood, ate organic whole foods, was a vegetarian since age 14 and had been a dedicated yoga student much of her life. How could she have a mass the size of her fist in her chest? How could she have cancer?!

Our dear friend Ann Marie, Elizabeth’s doctor, came to sit with us as we waited hours for her be admitted. I walked outside with her at some point, and started sobbing on her shoulder, “no, no, no, no, no….!” I was worried about all kinds of things, from the cost of the yet unknown treatment and her limited insurance cap, to her being able to complete her semester as a junior at the U of A, to how she would cope emotionally with the diagnosis of cancer, but I did NOT think she would die. That was not in my world of possibilities yet. I couldn’t even imagine my world without Elizabeth.

We were moved very slowly and gently into that reality, and for that I am deeply grateful. For the eleven months we had after this day, nine of them believing and trusting that she would have a full recovery and live a long, healthy life, and the last two months knowing she would die, I am grateful. Every moment was a blessing. She and I did a lifetime of healing in that time, she lived fully and richly, and in the end, she became love itself, showering us all with love, and in a state of grace that I’m blessed to have experienced in this lifetime.

November 2, 2012