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

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
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.

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 Maya

I live and write in Makawao, on Maui, Hawaii. I write on my blog about my experience with my daughter Elizabeth Blue, during the last year of her life living with cancer and dying in a state of grace. I follow my passion in my work, doing Energy Healing (Reiki, Karuna Reiki and Craniosacral work) and spiritual counseling, in person and at a distance, teaching Reiki and facilitating spiritual workshops. I have a blog on my site as well!

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