Poems of Prayers and Presence March 15, 2018


Going to the Oncologist Office, March 15, 2018
———
Cold blue sky day
Beautiful drive on back roads to West Akron
Bundle of books with me
Kim’s Mary Oliver
Elizabeth’s book club book about slavery
Thomas Merton’s book on Tao.
Always the books, my companions.
-
And my cameras.
I have my cameras 
In case  
An angel white cloud hovers over a church
In just the right way.
Or I see a
Barn.
-
I have been in touch with my posse this morning.  
Love and support accounted for.
~
And now here
And it's a pretty building.
And the secretary is kind, ah thank goodness.
We make chit-chat about the flu
Seidman Cancer Center, thank goodness a pretty
and unassuming building
,How her scanner attaches to her computer
“When it works, it’s great."
-
The nurse calls me back.
“Debra-Lynn,” she says.
“Thank you for calling me Debra-Lynn!”
“Well, there is the hyphen.”
“Not everybody sees,” I say.
-
Kinda sterile
Like a Holocaust experiment table
I love the line of questions. 
Because I get to say no.
Pain?
No.
Drugs?
No.
Alcohol?
No.
No, no, no, I get to say.
-
She weighs me.
“I'm closing my eyes,” I said. “It traumatizes me.”
She laughs. 
Some nurses don’t.
You never know.
——
Dr. Marquinez
Dr. M
I am calm.
I am empowered.
Not a mantra.

But the way I feel to the toes.
-
I see him in the hallway.
The Doctor.
He nods and smiles.
"Oh, yeah, I remember her. I like talking to her," his eyes say.
(Rapport with the patient is
CRITICAL>)
-
I had been avoiding “ONCOLOGY” for three years.
Scary place.
Scary people.
Scary outcomes.
-
They don't speak my language.
They say things I have no interest in hearing.
“We have good drugs when the time comes.”
Then they don’t listen to things I want to say:
“I don’t like your drugs.”
-
Dr. Marquinez, meanwhile, 
Seems to respect what I have to say.
He smiles when I talk and stops talking so I can.
~
I lay out my plan and my take.
This is my take, I say.
Which may be most important.
Since
I Am The Patient.
-
The idea that stress, alcohol, meat and honey may have 
Corrupted my spleen. 
Stress worse than ever these last few months.
-
I’ve turned a corner. 
The stress factors are diminished, even gone.
I'm ready to be in the light of health.
-
No fatigue? 
No. 
No energy dwindling? 
No.
-
Only other symptoms, I say: Enlarged spleen and hot flashes.
He moves me to the table, closes his eyes when he feels 
My spleen.
Like he is doing spleen meditation.
-
“The width of my hand.”
“I wouldn’t say massive, he said.
“I’ve seen smaller and larger.”
--
I tell him my idea of a 
perfect world 
at this juncture.
-
That he and Dr. Byrd would support 
Me going off on my own, going
More restrictive, more strict for a month or two.
See if I can calm things on my own.
-
“We think to do treatment when we see symptoms or when lab work is bad or lymph nodes are enlarged. 

 Your symptoms are not so bad. 

 Your white blood count, we sometimes look at doubling times of six months as significant. Yours was 67 three years ago, only up to 115 now. 

 We would call that slow growth. 
----------------------
The platelets are more of a concern.”
-
Uh oh, here it comes.
-
“We don’t like them below 100.
But of course you’ve had low platelets your whole life.
Still, 34…
Down to 15-20, could have spontaneous bleeds, gum bleeds, more dangerous bleeds.”
-
Yes, I think it’s time for treatment.
-
DR. M office
The dreaded words I never wanted to hear,
Though not so hard to hear at this point. Because I was ready. Because I knew they were coming.
I predicted this visit would bring this.
I was ready to hear the words.
I was also ready with
Plans in place.
Multiple plans. 
See how i tune with my body I am, doc?
-
OK, he said.
It’s not life-threatening.
He said.
Not yet, he said.
Not ever, I hope.
And yet, there's always yet to bring into awareness.
--
Standing order
———-
The ultimate freedom:
He gave me a standing order
For blood work.
I get to decide.
I get to experiment.
Thank you for trusting me
Dr. M.
~~~~~~
Maybe I don’t need Dr. Byrd right now?
-
The posse
--
Susan says she will give me blood 
If she thought it would help.
Kim says: “You inspire me to get back in the saddle. 
It’s not so high up.”
Emily says “This gives me inspiration.”
Elizabeth says "so nice you see the human in him....A good step in the journey.”
Chris says “You are my hero and my inspiration.”
Benjie says “I will stay home any night you need me.”
Sharon is a constant reminder that I am a loved.
Ellis says "come stay with me in Missouri. I will cook for you."
Sheila says I will give you blood.
Diane says You are smart. I know you will do medical intervention when you feel it's time.
-
Prayers and presence
I do not know what will become
Of me.
Nor you or you or you.
I cannot say whether I will live into my 100s
Like I want.
-
I can say how I will live every day 
These last few days have shown
Me.
I have turned a corner.
Into Love.
Into Trust.
I know what I have before me.
I have a support system.
I have the idea of
Inspiration
Love
This is 
Who I Am
And 
Who I Want To Be.
A role model for myself and my children and others, for truth, justice, authenticity and the journey to the deeper self.
-
No matter the outcome.
-
To live in this space
Is to have found that 
Thin veil
I have been looking for.
That is the weave.
The thread.
Whether one
Or the other
This is who I want to be.——

Photo of me is selfie taken orning before last, after I got the numbers. Couldn't sleep, got up 3 a.m. and took the picture in the bathroom.

Thank you to you and you and you and you and you
for helping me find this.




 Photographed on the way through downtown Akron to home.



Comments

Post a Comment

Popular posts from this blog

Steps to Raising Platelets

From the Platelet Disorder Association. I spoke the founder several years ago. She was on her deathbed several times. Walked out of the hospital and found the cure for herself. It was not drugs. https://www.pdsa.org/products-a-publications/diet-a-lifestyle-info.html Diet Information In our  Survey of Non-Traditional Treatments in ITP  about 40% of the responders reported some improvement in their bleeding symptoms and their platelet count with either the macrobiotic diet or the diet recommended in Eat Right for Your Type by Dr. Peter J. D’Adamo. Less success was reported for the Atkins and Zone diets, high protein, low carbohydrate diets. The recommendations listed in this article are based on principals from the macrobiotic and “Eat Right” diet, general nutritional research and research linking the impact of diet changes on other diseases that have common features with ITP. If you would like to implement some of the diet changes listed in this article, p...
Read more

"Plan on being an exceptional responder...." Glen Sabin who cured himself of incurable CLL

https://glennsabin.com/the-power-of-words-oncologists-attitudes-statistics-hope/ When I was originally diagnosed with incurable cancer 27 years ago, it was my primary care doc who—before HIPAA privacy was a thing in the U.S.—told my father that I, a newly married twenty-eight year old at that time, had six months to live. Six. Months. To. Live. Not five, not fifteen. Six. Brilliant mind; how did he know?  He could have said six months until death; the statement ends up meaning the same thing. Back then, it was common for physicians, especially treating oncologists, to assign a number or range on how long a patient had left on the planet.  In diagnosing an advanced or otherwise life-limiting, so-called terminal disease, they also became the deciders of life expectancy. Back in 2012, Sweden’s esteemed Karolinska Institutet  published a paper  that looked at a large amount of data, across a number of institutions comprising 500,000 newly diagnosed cancer pat...
Read more

One person's story of getting platelets up

https://www.pdsa.org/join-the-community/personal-stories/item/130-meditation-breathing-diet--more.html I have always been a very healthy person. I’m one of those people who wildly loves the work I do. Of course, that means that I used to have trouble saying no to the great new opportunities and challenges that came my way…so I didn’t. I did much more than was genuinely healthy. I say all this because I feel that (even though my western doctors denied a relationship) it all lead up to what happened to me in June (2003). One day I was taking a large group of kids hiking (filling in for a friend on top of my own work and maxing myself out far too much)…and noticed when I got back that I was covered with small freckle like things all over my arms. I was confused by it at the time and basically I tried to deny being too alarmed, so I just wrote it off as “weird.” I had small bruises all around my shoulders under my backpack straps. I asked people what it was – was it chicken po...
Read more