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, 4/13/12Elizabeth Blue, 4/13/12Elizabeth 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…
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, 2012Elizabeth 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, 2012Elizabeth, taken by Julianna in NY – March, 2012Andrew 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, 2012The gift from the nurses at Elizabeth’s last chemo treatment – March 21, 2012
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…
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.
Luminous Blue 