Elizabeth’s reflections: Carlo Rossi and Chemo

“There is a vitality, a life force, a quickening that is translated through you into action, and because there is only one of you in all time, this expression is unique.  And if you block it, it will never exist through any other medium and be lost.  The world will not have it.  It is not your business to determine how good it is, nor how valuable it is, nor how it compares with other expressions.  It is your business to keep it  clearly and directly, to keep the channel open.  You do not even have to believe in yourself or your work.  You have to keep open and aware directly to the urges that motivate you.  No artist is pleased…there is no satisfaction whatever at any time.  There is only a queer, divine dissatisfaction; a blessed unrest that keeps us marching and makes us more alive than the others.”  Martha Graham

 

“Allowing yourself to be vulnerable is one of the most attractive things you can do.” Rick Owens

Carlo Rossi and Chemo
by Elizabeth Blue

April 12, 2012
Sometimes I get the strangest, strongest desire to drink or eat or smell or whatever, something I used to drink or eat or smell all the time.  These are often things I don’t even like but because I get such a feeling of being in a previous place/time when I have the sensory experience or re-experiencing a past and familiar sensation I want this thing like I want bones because I want to revisit my life in that past moment where the original connotation occurred.
And this is an example that happened right now: here I am quietly tumbling to myself and: WHAT?  I crave Carlo Rossi Sangria?  My drink of choice ages 12-14?  Can this be real?
No.  Certainly not.
What can be real is that I crave to be in the same body, mind, place or mind-space as I was at those ages.  And to have the nowness of me in the perspective of then. 

Elizabeth Blue

Elizabeth – March 2012

 

 

 

 

 

 

 

 

 

It also reminds me of this time I went in to have chemo and I was by myself.  
By the way: chemo makes you extremely stomach sick and leaves a lingering metallic taste in your mouth that lasts for days.  At the time chemo is being pumped into your veins you can:
taste. the. chemo drugs.  
Yeah really.  I didn’t know that was even possible but then again what do I know about western medicine really?

Anyway, I was getting chemo and I walking around with my traveling IV hook up thing, which is on wheels to permit movement, and I came across a box with candy.  Being a lifelong lover of candy I selected for myself a package of Chips Ahoy cookies having no appetite for them (due to the chemo queasiness) I decided I would save them for later when I was high and hungry.  Good plan?  One would think yes, but no.

I bring the cookies home in their bright blue packaging and I can’t even look at them. When I accidentally drop them out of my purse I stare at the package on the floor, my stomach starts to churn and I stare and stare until I can convince my body to contain its innards.  And then I pick them up and put them in a drawer because:
THE COLOR BLUE OF THE PACKAGING IS A COLOR I RECOGNIZE AS EXISTING ONLY WITHIN THE TREATMENT CENTER.  
Seeing that color makes me taste chemo drugs and that taste has overpowered any childhood associations I have of liking these cookies.  
I remember those associations, Chips Ahoy cookies always came with pizza on pizza day and that was a big deal and I would eat them as slowly as possible to make them last as long as I could.  
But that doesn’t matter anymore to my brain.  What matters is chemo chemicals and their associations.
And now what I associate with chemo I do not want to put in my body because chemo tastes like poison.
You know why?
Because it is.  The poison that saved my life.  xoxox to Persephone and your pomegranates.  Winter is created but Spring is here.

This doesn’t make sense, I mean, my language if you’re outside of my head.  I’m just allowing myself the rarely indulged or afforded luxury of vomiting all over tumblr.  I mean, shhh Elizabeth, someone might even be listening.  I mean reading.
Ooops.

This is from Elizabeth Blue’s tumblr (blog) and more can be found here.  I am only posting ones here that are related to her journey with cancer, but if you want more of Elizabeth and her thoughts, loves, interesting obsessions (hairless cats, justice and fashion, to name a few)…see more at “Freshly Shaved Legs”

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

Memorial Service and Celebration of Life for Elizabeth Blue

We had an extraordinary service for Elizabeth Blue, in Tucson, Arizona, on October 13, 2012.  There were friends and family (and a few who’d always wanted to know her),  representing all the different aspects of Elizabeth: family, friends, teachers, travel companions, healers, students… from Tucson, Seattle, Berkeley, L.A., San Diego, Colorado and Boston. It was everything I’d hoped it would be, bringing to light many of the facets of Elizabeth, with such love, grace, humor, tears and laughter.

It was 3 hours long, and I couldn’t bring myself to edit out any of it, so it’s here in its entirety. If you want to watch parts, here is the program so you can skip around.

Program included:
Views of the altars (silent)
Amazing Grace sung by Zelie Duvauchelle
“Tucson My One True Love” poem by Elizabeth Blue read by Lucia Maya
Welcome by John Morgan
Speakers/Eulogies by Kathleen Bowman, Felice Espinoza, Josh Bowman, Samantha Salazar
Poems by Elizabeth Blue read by Jane Hans, Tashe Kurland, Julianna Meagher, Victoria Joy, Zelie Duvauchelle
Slideshow of Elizabeth Blue in Pictures
Stories and Remembrances of Elizabeth Blue from those gathered
“In the Presence of Death” by Kathleen Bowman, harpist
Kaddish, Jewish Prayer for the Dead, read by David Hans
Circle Ritual of Remembering and Release
“My Wish for You” poem/blessing by Elizabeth Blue read by Greg Meagher

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.

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.