Luminous Blue

Tag: medicine

  • 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.

  • 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 ©

  • 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.