Luminous Blue

Tag: Family

  • 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 Maya and Elizabeth Blue
    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 Blue
    Elizabeth with my mom in Sedona on a family vacation – January, 2012
    Elizabeth Blue at the Grand Canyon
    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

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

    Elizabeth Blue
    Chemo drugs for Elizabeth’s last outpatient treatment – March 21, 2012
    Elizabeth Blue heart of hope
    The gift from the nurses at Elizabeth’s last chemo treatment – March 21, 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

  • Elizabeth’s musings ~ November, 2011

    These were written by Elizabeth Blue in a journal format, her thoughts in the first weeks after being diagnosed with cancer…

    11.9.11

    Alright, day two of three.  Day two of three before chemo starts and my body will never be the same again.  Maybe I’m being overdramatic.  Probably.  Long day Friday (11.11.11), chemo, bone marrow, consultation.  A B C not in that order.

    11.10.11

    Surgery Outfit

    I’m standing in my closet for five minutes trying to decide what one wears to a surgery (inserting a port for chemo) that I didn’t plan on having a week ago.
    I’m standing and standing and my mom and her friend are coming in seven minutes.
    So I pull out a pair of underwear.
    Because I know one wears underwear to surgery.
    And I know one starts at the beginning.

    11.13.11

    My Least Flattering Best

    So I kept smiling and taking pictures because it was the only thing that made me feel good.  When I used to smile in pictures I found it my least flattering angle, especially if the pictures were taken from above.  

    NOW it seems to be my most flattering angle.  As I look most like my past self in them.  (My past self’s least flattering angle is my current self’s best.)
 Would I kill to look my past worst now as if it were my best?

    Maybe not.
    Maybe there’s a new best.  A new best which will be all the more beautiful.

    11.15.11

    A Critique on the Philosophy of Science

    I’m sitting here at 12:40 AM Tuesday November 15 2011 in my bed in my apartment in The Castle worrying, horribly worried I am.  I am worried, horribly because I have had bloating (I only started calling it bloating just now) I’ve been calling it swelling.  I’m worried because I’ve been having swelling in my whole body because of this tumor in my (I almost capitalized tumor, went back to consider doing it then stopped because I decided I didn’t want to give it that much power, (just a note)).  I’m horribly worried because I’ve been having this swelling in my body from the tumor in my chest which is lymphoma (damnit, I learned how to spell it).  The swelling was so bad, I looked absolutely horrible in my face  and upper body.  It was like I had gained thirty pounds or more in my upper body but especially in my neck and face.  It was the ugliest I have ever felt or been in my own mind’s eye.  It was so unexpected.  Prepared for baldness I was, but this gargantuan two necked creature with beady little eyes and a tiny mouth to seduce me in the mirror?  No one warned me.  No one warned me how hard I would have to look inside myself for any semblance of beauty.  And while I found worth, I didn’t find anything so completely beautiful on the inside of my body that it made me smile as the outside beauty does.  I didn’t.  
    Anyway.
    I’m worried because well, see, after a few full days of this, when I got up on Sunday morning (the same morning my dad was flying home) I was bursting.  Really bursting, on my face, my skin had tightened so much that it had torn or cracked and there was dried blood on my face from it.  And godamnit I was not going to live like this.  So I called a doctor who isn’t my doctor but was the on-call doctor at the hospital and he eventually, after hesitating put me on diuretics which make you pee a lot but are supposed to also make you lose water weight.  I just became terrified tonight because you see the water has been dripping from my neck and my face to my stomach and my abdomen and my pelvis and now even my ass seems different and I’m terrified they’re never going to get back to the same shape.
    And tonight when I got my period because that’s what this has all been leading up to: I got my period three days after I started my first round of chemo.  And when I went to pee and saw blood in the toilet I freaked because I figured there was something
    wrong with me.  
    And I freaked because I finally got a little bit of feminism in that moment.  And because of the last thing I did in school on the Wednesday before the Friday I went into the hospital, (it was probably the third thing I’ve cared about in school all year so far).  I presented on the “Feminist Critique of the Philosophy of Science” with particular adherence paid to the biological sciences.  Basically it was all about how the idea of human in our society has been constructed in such a way that is male.  This notion has infiltrated most disciplines of thought, one could argue, including medicine/science in which the healthy human is male and singularly female experiences such as menstruation or pregnancy or certain kinds of hormone manifestations are treated as illness.   The other two girls in my class didn’t seem to think it was relevant.  You know, right now, in this moment when I saw blood in the toilet and it was my period and I assumed there was something wrong with me.  It seems pretty fucking relevant.

  • 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

  • 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.