No Illuminati

There is no greater agony than bearing an untold story inside you.  (Maya Angelou)

Just last week I was trying to find a way to express this pain, and Maya Angelou said it for me.  It was a serendipitous discovery, while looking for her exact wording on believing people when they tell you who they are.

I guess there are things I will never say.  Some, to specific people like my kids, husband, or friends.  Other thoughts, feelings, and events would be to the world in general.  While Angelou is completely correct about the agony of that, my filters tell me I’m not up for the intense emotion required of me to actually have these discussions and deal in turn with the emotions, or worse: the lack of others’ emotions, that telling my truth may cause.

I don’t have any delusions that I am some great mystic or prophet.  I know those in my sphere will live their lives without any grand illumination from me.  Actually, I know my untold story has no grand illumination at all, for anyone.  Maybe not even me.

And yet, biting my tongue gets really old.


More about me

I like this:

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and this:

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and this:

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and this:

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I love this:

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with the help of her:

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and especially, him:

I wish I could spend much more time with her:

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I want to finish this, this year:

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I want to spend a long weekend here:

Hotel Walloon Lake Winter

and two weeks here:

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with a side trip here:

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I am a huge supporter of:

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as well as:

Leukemia & Lymphoma Society Logo

And I can, because of him:

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I’m counting on strong women like these:

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and her:

I like:

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And I love:

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Now for a cheat sheet:

Pierogi, Sever Yzerman with the Stanley Cup, pink velvet shoes from Anthropologie, a Cosmopolitan

Lady Justice, Ruth Bader Ginsburg, PRESIDENT Barack Obama


Son Bob’s unfinished quilt

Walloon Hotel (Walloon Lake, MI), the pyramids at Giza, Petra

DKMS (international blood donor registry), Leukemia and Lymphoma Society (big sponsors of blood cancer research), Dr. Hanna (my oncologist)

Clair and Sophie, Malala

A random goat – I love them all, Sophie reading to Bella, Sheiky


The more things stay the same…

At one point I heard myself saying “I’m tired of being a disease. I want my self back again”.

…the more they change.

Yes, I know I said that backwards.

Living in the Detroit area, a lot of our news coverage the past few days has been of the plea-bargain sentencing of the doctor who, in the guise of medical treatment, sexually abused hundreds (at least) of young girls.  After days of victim impact statements, the Assistant Attorney General (who was the Prosecutor) and then the Judge had their turn.  And one phrase that came up over and over again was about owning one’s truth.

While people don’t own their truth often enough, for women it is a notion that is associated most often with sexual harassment/molestation, or domestic violence.  Think of the Me Too Movement, then hold that thought through a corkscrew turn I am about to make.  Trust me.  This will connect.

With the cancers and treatments, I have been bald three times in the past five and a half years.  I mean: bald as a cue ball.  Each time was at least in part during the winter.  Even with a knit hat, do you have any idea how cold a bald head gets outside in a Michigan winter?  Woo!  And it would grow back to an awkward length, and then – boom! – another cancer, more chemo, and bald again.

It got old.

My last chemo was in early fall of 2016.  Bald.  Then my hair started to grow.  Every now and then I would have it trimmed, just to even out the ragged look.  But never much, because there was never much.  A few more months.  Repeat.

In the past several months, I have made a couple of appointments with the woman who has styled my hair for years.  I was not able to keep either of those appointments.  Although not as robustly as my BC (Before Cancer) hair, it did continue to grow.  Erratically.  Unevenly.  I looked like a bag lady.

Finally, today, all the life elements came together, and I was able to go across town to my stylist’s house, for a trim.

I had no firm idea what I wanted her to do.  She has done my hair for a long time, and has always been on top of trends, so I trusted her to listen to me, then translate that into a better look.  (MDs…learn a lesson from her!)    So I talked.  She asked questions and made comments.  At one point I heard myself saying “I’m tired of being a disease.  I want my self back again”.

And there it was.

I’m tired of being a disease.  I’m tired of being a disease.  Of being perceived as the diseases I have had.  Of living a limited life because of a disease.  Of fearing a government that sees me as a disease and hence, a draw on the bottom line.

I had never thought of it quite that way before, but it’s true.  For the past five and a half years, even I have identified myself as…a disease.

My truth.

This is new for me.  New thinking.  And I have no idea where it will lead, if anywhere.  I considered including a picture of my new hairstyle, but right now that is not the relevant piece of this blog.

My new truth is…itchy.  It’s like a fresh cut, and healing may or may not leave a scar.  But it is my truth, and I am working to own it.

Time to get moving

In April of 2016, due to some serious arm twisting done by my daughter, I walked a 5k with her.  She thought I needed a push, to restart recovery from a stem cell transplant.  I was afraid I couldn’t do it, despite months of walking as training.  I was afraid I would make a fool of myself or embarrass her.  I was afraid race officials would take down the finish line before I reached it.

I was afraid.

But, in one hour and one minute, I finished.

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The next morning I saw the unmistakable dimple of breast cancer.

Mammogram, ultrasound, and biopsy confirmed what I already knew.  And I was amazingly calm, probably because of the two previous cancers.  So I methodically went from surgery to chemo (and attendant hair and fingernail loss) to radiation.  But I was out of commission for six months for the walking that had become a habit.  And a year later, I haven’t regained that mojo.


I keep seeing television commercials for a 5k run/walk to be held in late April.  I took a chance and asked my son if he would walk it with me, and he said “Yes”!  Now it’s time for me to crank up the walking again.  Because I’m already feeling the twinges of the fears from the last time.

I’ll keep you posted.

Here we go again?

Recently my body has been telling me things that my doctors won’t believe.  And it gets more and more frustrating that they put their complete trust in their tests, while ignoring what my actual body is telling them, through conversations with me that are short and perfunctory, disbelieved and ignored.

I want to scream!

It calls to mind an incident with my son when he was a toddler.  I don’t remember the offense, but I do remember yelling and not listening to him.  A diatribe, not a give-and-take conversation.  Finally I asked why he had done…whatever…and his tearful, frantic response was “I’m trying to tell you”.  To this day, when I clearly hear his sweet voice in my memory…my tears flow.  (I love you, Bob!)

I am currently waiting for a return call from the nurse at my breast surgeon’s office, to tell her of new physical developments and see if other tests should be added to my scheduled diagnostic mammogram on Friday.  I have no confidence that I will receive this call prior to the appointment.

Please read the following article, from NPR.  I wish my doctor would.  Everything she says as a patient is true.  If the body is treated, but the spirit is ignored, healing can never be complete.

{Note:  I have just spent a half an hour on chat with a tech for WordPress, trying to paste more than just a link.  Since the tech sees no reason why I would need to do that…and WP does not seem to have the capacity, anyway…I will try to copy and paste a few paragraphs, followed by the url.  Wish me luck.}

“Brush With Death Leads Doctor To Focus On Patient Perspective

The searing abdominal pain came on suddenly while Dr. Rana Awdish was having dinner with a friend. Soon she was lying in the back seat of the car racing to Henry Ford Hospital in Detroit, where Awdish was completing a fellowship in critical care.

On that night nearly a decade ago, a benign tumor in Awdish’s liver burst, causing a cascade of medical catastrophes that almost killed her. She nearly bled to death. She was seven months pregnant at the time, and the baby did not survive. She had a stroke and, over the days and weeks to come, suffered multiple organ failures. She required several surgeries and months of rehabilitation to learn to walk and speak again.

Helpless, lying on a gurney in the hospital’s labor and delivery area that first night, Awdish willed the medical staff to see her as a person rather than an interesting case of what she termed “Abdominal Pain and Fetal Demise.” But their medical training to remain clinically detached worked against her. Later, in the intensive care unit, she overheard her case being discussed by the surgical resident during morning rounds.

I had a hospitalist literally stamp his feet at me, when I got tired of his inability to listen and told him I was going home.
I know that there are people who are getting tired of me still talking about health issues after 5+ years.  My body is working ( or so I will say, unless Friday’s test(s) prove otherwise), so I should be acting well.  But my spirit has been disbelieved, and I continue to suffer the consequences.

New Year

My smaller glass can’t contain both complacent happiness and purpose at the same time.

January 1, 2018

One of the things about being twice-diagnosed as terminal is the almost automatic change in perspective.  How can it not change?  There is now a “use-by date” on life, as opposed to some mysterious date way out in the future.  And even if medicine, or drugs, or holistic treatments such as turmeric or cannabis oil retract the terminal tag…it is impossible to un-see  the end.

I have been uncomfortable with wishing anyone “Happy New Year”, because, frankly, happiness is not first on the list of things I wish for anyone.  It might not even be in the top ten.

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As it turns out, the Rabbi got tripped up by the numbers.  2018 is actually the nineteenth year of the century.  Be that as it may, the rest of this quote resonates with me.  She speaks of a life with purpose, not happiness.  Thus my earlier grocery-store quote of a use-by date.  Happiness may come.  But more likely it will be exhaustion from what is required to live life with empathy and purpose, resilience and compassion.

And purpose can show up when it is least expected.

I believe I have earlier mentioned the appeal to me of being a lab rat when I had my stem cell transplant.  None of the doctors expected me to survive it.  But they pre-treated me with a type of drug that had never been used before in preparation for the transplant.  Whatever happened to me, others would benefit from the knowledge gained.  As a side benefit…I survived.  I cannot say I have always been happy about that.  Recovery from a sct is horrific…grueling…and seemingly never-ending.  I am four-plus years into recovery.  More new knowledge for the doctors.  More exhaustion for me.

I would be happy to be living a comfortable life of retirement with Bob.  Not going to happen.  Comfortable becomes less and less likely, for a variety of reasons.

I would be happy to spend my days with my granddaughter, Sophie, like my mother did with my children.  But geography and our finances make that impossible.

I would be happy to have my family and friends not having to roll their eyes when I go on a political rant.  But I will fight to my dying breath for Sophie’s rights when she is a woman, to be secure.

I’m not saying that it is immoral to seek happiness.  I do believe that pursuit must be kept in better balance than it is currently, in a culture of reality television, plastic surgery, and unbridled greed.  <cue eye rolls>


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My smaller glass can’t contain both complacent happiness and purpose at the same time.

My wish for all is that you find a life of satisfaction, and it fills your smaller glass to overflowing.  And if there is some happiness – good for you!



On my 8th birthday, I put all the pieces together and figured out that my father was an alcoholic.  He was more than an alcoholic.  He was a falling-down drunk.  But I was 8, and such distinctions were beyond me.

This will surprise some, but my salvation at the time was that I was a Catholic school kid.  To this day, no one in my family admits to knowing what was going on.  The religious sisters sensed something, but never asked for specifics from their obviously distraught student.  His drinking was a secret that must be kept at all cost – and the cost to me was enormous.  But there was daily Mass.  There was something about the music – both pre- and post Vatican II.  The candles.  The incense.  The regularity of the liturgy and the liturgical seasons.  These were constants in a life of chaos.  For that hour, I was safe and succored.

Fast forward.

When I entered a doctoral program in an ecumenical seminary – one of two Roman Catholic women students – the head of the seminary was the retired head of the World Council of Churches.  He led us through our first week, and was a big fan of meditation from a psychological perspective, as well as brain function.  The benefits of moving from an alpha state to a beta state.  Try as I might, the beta state was elusive to me most of the time.  A few moments, here and there.  Rarely.

I was working in parishes as a pastoral minister during and after those studies.  I used to bring in a priest from India, to do adult education sessions on meditation.  He was well-known in the Detroit Archdiocese, and good at what he did with the topic.  For everyone but me.  Meditation was just not going to happen.  No beta state.  No letting go of the brain chatter.

Years later.  Once.  While as campus minister at Catholic high school.  In total despair and desperation during the senior retreat, I took the pyx (small container for a consecrated host) and knelt during one of the most frustrating sessions.  Four hours later, the leader of the session tapped me on the shoulder and brought me back to an alpha state.  I have no idea where my mind had been, but it certainly wasn’t in a room full of bitchy teenage girls, taking our their cattyness on each other.


This comes up now, because of recent Me Too revelations.  I did not experience sexual harassment in the workplace of the church.  The one kiss was from a pastor/boss.  On the cheek.  In public.  My response was “I don’t know whether to never wash my cheek, or get a tetanus shot”.  Also in public.  Those gathered laughed.  The priest was confused.

But the lack of support…the lack of credit…wore on me.  The statements.  “…so-and-so thinks you’re too severe”…”I won’t fire you, but you will quit”…”Hey girlie, come here”…”A baby threw up in the entrance – clean it up”…”We don’t need to pay her; her husband is a dentist”.


And then there was cancer.

All my priest friends deserted me.  All my ultra-religious friends deserted me.

And I’m pretty sure God – if there is a god – also deserted me.

But the music, the “smells and bells” – as my Protestant fellow-students teased about – can still reach a place that nothing else can.  My favorite liturgy of the year is the Mass of the Lord’s Supper on Holy Thursday (the Thursday before Easter). and once a year I still miss it.  When life is too much, I still run back to that music – easily obtainable online – for comfort.

Like that 8-year-old kid, who found comfort from chaos in the liturgy.