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

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.

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 Blue

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 Blue

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

Welcome to the Arizona Cancer Center

11.9.11

Elizbeth Blue

Elizabeth Blue, 2010, before cancer

‘Welcome to the Arizona Cancer Center’

An emotional reaction and relog of my first experience at the Arizona Cancer Center when I was sent there to have blood drawn before chemo on Friday.  Today (11.9.11) is Wednesday.  I am very swollen and can’t breathe that well.

“Welcome to the Arizona Cancer Center if that’s appropriate…?”
“This is her first time here”
“Would you like entertainment? I have some singing dogs in my office.”
What.
“I have five Chihuahuas at home.  Do you have any dogs”
“No a cat.”
“Peggy can you help me with this?”
“I have slippery veins”
“Why didn’t you tell me?”
Peggy is bobbing around and won’t stop trying to find different ways to look into my eyes.
They’re swelling up with tears.  ‘welcome to the Arizona cancer center, if that’s appropriate.’  ‘This is her first time’ ‘welcome to the Arizona cancer center, if that’s appropriate.’ ‘ This is her first time.’
Tears well up behind my swollen eyes and I hope they can pretend along with me that I’m crying cause they’ve got a needle in my arm and are moving it around hoping to poke a vein, hoping to hit time saving gold.
They will.
“I just had surgery yesterday”
WHAT
“I mean the day before.  I had an IV in”
“You have one in now?”
“No they took it out, it was in my right arm.”

A woman behind a curtain is wheeled out.  She has one eye or a bandage over one eye but I can only see one eye.  She is pale and large and her arms don’t fit in her wheelchair.  I think she’s wearing maroon.  
“They destroyed my arms in the hospital” She says, to no one in particular.

“Who is your Doctor?”  Peggy asks.  
Dr. Miller
“Dr. Tom Miller”
“Oooh the best.”
Yes.  The best.

The other one brushes my hair away from my shoulder, or maybe this is before, when I first sat down.
“Such pretty hair”
“Thank you.”
It is pretty, its long and soft and just the right color of fawn brown and the way my bangs frame my face is the way it looks best and how the fuck am I supposed to live without it.
It will be gone soon.

‘Welcome to the arizona cancer center, if that’s appropriate.’
‘Its her first time’

“Can you hold this for me?”
I wipe a tear with make up in it.  There is blood on my finger from the gauze I was holding on my arm.

‘Welcome to the arizona cancer center.  This is her first time.’

A old woman who is also a patient asked if I liked purple earlier but I was wearing blue and said yes because she was probably an angel and even so I wasn’t that nice to her.

“What’s your cat’s name?”
“Blue”
I’m changing my last name to Blue to match his and maybe if I change my name the cancer will go away my mom’s girlfriend says.

“Male or female?
“Male”
“Peggy can you help me, its nearby there right?” Twist twist twist needle in my arm.
“There, look its in.  Male or female?”
“Male”
“What kind of cat?”
“Bengal”
“Oh my god I used to have a bengal!  They are the best cats.
“Yes, they’re very smart”
They are.
“Well maybe she”
HE
“can give you some comfort in this time.  You might even want to get a little treat for him or her since she will be helping you so much.”
“Yes”
Maybe some chicken.
“You know what my cats used to love?  I would get them a whole plant of catnip.  They loved that, I would put it in a planter, they would love that.”
“Yes, they really do love catnip”  I’m sobbing now.  There is a man asking where to go, they say he could go outside if he wanted.  
“Its too cold, its under 90 degrees.”
No really, he’s serious.
“I thought it was nice out” The nurse says quietly to me.
I would have killed killed killed brutally with an axe to get to breath this kind of air had they kept me in the hospital one more day.  Had they kept me inside I would have killed killed killed myself with the infectious danger of cold air to feel it pulsate through my lungs.
“I think its nice out today too.”
We talk more about the weather.  She’s blond from West Virginia.
“You have the good tape” When she starts to bandage my arm
How the fuck, did I learn in 5 days the different kinds of tape used to cover gauze and why they are good?
“Yes, I heard they were using it on horses for years before they even thought to use it on humans.”
“Wow.”
“You can go now.”
“Ok. Thank you.”  Peggy is nowhere to be seen.
I don’t know if  I should say ‘thank you, I’ll see you later’ or just ‘thank you good-bye’ so I just say thank you and rush outside because I just remembered I am a feeling being and that I’m crumbling to pieces and I’m still whole inside and these people aren’t and that woman I wasn’t nice enough to in the lobby was probably an angel goddess sent by my ancestors or god and when she left she said to her husband/son ‘c’mon let’s give this youngin some privacy’ and I realized then and felt guilty.  

And I have not seen a single person here within ten years of my age except the receptionist and she smiled at me like she was going to eat me alive like a spider meal with all her fake overblown kindness and handed me a buzzer like I’m at a restaurant and wouldn’t let me go outside or do anything except offer me some coffee or tea but coffee weakens your goddamn immune system bitch and I’m trying to strengthen mine because I’m going to have chemo soon and that’s why I’m quitting smoking, duh, to strengthen my immune system and that’s why I’m not getting my gorgeous tattoo worked on that my mom thinks may have caused the cancer.  All because one of my doctors (Dr. Brown) who I like and trust as much as you can like and trust a person you have talked to for maybe an hour total and only met twice and along with her ‘presiding, Dr. Miller (the best)’ she is supposed to save my life.  I’m doing all these things to boost my immune system because she says they will help me to not get an infection during chemo and therefore will stay alive.

And I’m sitting here writing this in my slutty halter top dress with my bleached out jean jacket and cowboy boots and cheap sunglasses and runny make up and you could see my bandage covering the cut from the biopsy if I removed my jacket but that’s fine.  I’m sitting here dressed like this because its how I always dress so fuck you.  And I’m sitting here with make up dried up and down my face waiting waiting waiting until its time to go to a different hospital and get my heart checked to see if it can withstand chemo (they think it can).  And I’m writing because I realized that’s what Mehron and Ava and I would all do in that situation and that this is a part of me now and I am a writer and I will write it all.  

And because I remembered that I am a whole living, breathing, feeling, animal, being.  
And that I am sensitive to emotions and things and one eyed people and needles and surgery around and in me.  And that this place is crazy and maybe I’m not so I need to relay it to you all.
And also because the difference between the visionary and the crazy person is that the visionary comes back.  I’m trying to remember this.
As I sit on this beautiful day in the garden of the

‘welcome to the arizona cancer center, if that’s appropriate?’
No, its not.
‘its her fist time’

‘welcome to the arizona cancer center, if that’s appropriate?
No its not.
‘She has a cat.’

‘welcome to the arizona caner center, if that’s appropriate?’
‘Its her first time’
No its not.

‘if that’s appropriate?’
‘If that’s appropriate…?’
‘If that’s appropriate.’
‘if that’s appropriate if that’s appropriate if that’s appropriate if that’s appropriate if that’s appropriate if that’s appropriate.

No its not.

“Welcome to the Arizona Cancer Center!”
“No its not.”

~Elizabeth Blue ©