Healthcare, or Lack Thereof.

Part II:
Further thoughts on Portland, Oregon’s most recent Health Care Rally…

Why was I there? Who was I there for? What did I hope to accomplish?

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I was there at the Health Care rally holding some people in my heart. 
Knowing each of them guided my development as a nurse, and as a human being. 

“RJ”
A veteran of the Persian Gulf War.
RJ was living in Idaho when I met him. The VA Administration was responsible for RJ’s healthcare. He needed treatment for cancer, and the type of treatment he needed required a temporary move to Portland, Oregon.

One of my goals as his Cancer Care Nurse Coordinator was to inform and educate him about the treatments he would be receiving. Another goal, was to encourage him to tap into his inner strengths, and stay as active as possible in the downtime between daily treatments.

RJ had never been to Portland before. I asked him what he might enjoy seeing and doing while he was here. He thought for a minute, then he told me that he would love to see a Portland Blazers game.
It took a few phone calls, but I managed to get someone on the phone from the Blazer’s Communications & Public Engagement office.
I explained that I had a visiting Veteran in town for several months who really wanted to see a game. I asked if they hook me up with a couple tickets.
A couple? How about four? That was the gracious reply.

I was thrilled, and tremendously grateful.

The tickets were for a home game against the Houston Rockets. A winter game, on a snowy February evening.
RJ had many, many, loving family and friends. That particular month, they were all located in Idaho, and his home state, Ohio. None were able to travel to Portland to take him to the game.
I’m really not a sports fan, not at all. I wanted RJ to have an amazing time, and to attend the game with people who would genuinely enjoy it with him.
I asked my husband, Mr. Blitch, to round up two other basketball fans to go.

I was the driver. We picked RJ up at the VA Hospital; the four men, who had never met each other, all went to the game.
The tickets were at the will call window, along with a Blazer’s hat and shirt that had been left specially for RJ by the Blazers’ management.

He finished treatment in the early spring. He was able to return to his home in Idaho for a while. He had to fly back frequently for follow-up appointments with his Portland Oncologists.

The last time I saw RJ, he was wearing his Blazers shirt from the game.
It was my honor to know him.

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Franklin Pierre King
My beloved Uncle Frank. Born March 18, 1932, died March 31, 2015.
Eldest of 3 children born to George Pierre and Helen Bebout King during the The Great Depression. They grew up desperately poor. He didn’t talk to me much about his childhood until the last nights of his life.
Frank served in a US Army Unit during the Korean War. He retired in 1995, after 30+ years of work as a Right of Way agent for the State of Oregon.

Frank loved to dance. Ballroom, waltz, swing. Anything involving music and feet moving across a dance floor.
When my son, HH, was a freshman in High School, Frank had a little talk with him about dancing.
You don’t ever leave a lady standing by herself against a wall in need of a dance partner, he told HH.

Frank died from complications of bladder cancer. He died 9 days after my Aunt Donna died. Donna had lung cancer.

Both of their deaths, especially being so near in time to one another, were tremendously difficult on our family. As an Oncology nurse with a background in Hospice care, it was not my duty, but my sweet honor to participate in the End Of Life care for both of them.

And, I must note: due to retired government employees benefits, and Hospice services covered by Medicare, both Aunt Donna and Uncle Frank had access to excellent Oncology and Hospice care.


Esther Matthews Applegate
My maternal grandmother. Born October 10, 1910, in Calgary, Canada.
Esther had poliomyelitis (polio) as a child. Fortunately she and her family had access to Health Care. She survived. And despite suffering debilitating paralysis, with the aid physical therapy, she was able to walk again, and live a full life.

Esther was diagnosed with thyroid cancer in her 50s, colon cancer when she was in her 70s. She had multiple layers of health insurance and retirement benefits, from her role as a US Army wife during WWII and the Korean War, and from her own work. She was a retired language teacher, fluent in French and Spanish.

Colon cancer treatment included surgery to permanently remove her colon, followed by Radiation Therapy. She suffered a stroke when she was in her early 80s, and lived until 1999. She died on my elder brother’s birthday. She was not quite 89 years of age.

And again, she had full and unhindered access to Health Care, at every stage and phase of her life.  Both as a Canadian citizen, and here in the US.

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Healthcare, or Lack Thereof.

Part I

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I recently went to a Healthcare rally here in Portland. The “It’s NOT over – PDX Healthcare rallywith Oregon Senators Ron Wyden, Jeff Merkley, and Oregon State Representative Suzanne Bonamici.

I had several people ask me why I was going, and, … what did I hope to accomplish there?

Where to begin?

1) I’m a Quaker. This is what Quakers do; we engage. We are involved with our community, the processes of government.

2) I grew up in Berkeley. Berkeley in the 70s and 80s. It was a thing. We were active. We were involved.

3) I was there for my dad.
For every aspect of his care, for my role as his healthcare advocate.
Because it took 3 flipping months to get a wheelchair for a retired US Forest Service government employee, with the sweetest insurance plan an American could have via Federal Employees Health Benefits Program. An 83 year old veteran of the U.S. Army.
For the love of all that is good and holy.
Not acceptable.

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4) I was there for one of my dearest friends, Michael.
Over a decade ago, Michael’s wife was diagnosed with a rare form of cancer.
They have, like many of my cancer patients, become excruciatingly and intimately familiar with the American health care system.
They have explored every treatment option available for her here in Portland, and have travelled as far as England for further treatment.
Michael, like me, has a Quaker background. He carries a copy of the Constitution of the US in his pocket. He could dance circles around many of our country’s elected legislators on the issues of Human Rights, Tax Law, and Health Care Reform.

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5) I was there for a favorite little buddy of mine, Bryson.
Bryson was born in 2013, by all appearances happy and healthy. But due to the fact that he made his arrival two weeks earlier than anticipated, he received a mandatory MRI. This test unexpectedly revealed a rare malformation in his brain (Vein of Galen Malformation).
This malformation, in turn, caused cardiac failure and pulmonary issues.
Bryson was given a 7% chance to live. He was rushed into brain surgery when he was only 4 days old. His first three months of life were extremely difficult — he received two more brain surgeries, suffering a stroke during the second.
He’s a tremendously strong little person, and has consistently amazed and astounded his family, friends, and medical providers. But he does continue to experience Cerebral Palsy, seizures, and other vision & neurological issues, which require frequent and expensive medical monitoring and rehabilitation therapy.

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6) I was there for the many people I care about who have had, or are currently having,  treatment for cancer. Some my family, some my friends, and many of them, my patients over the years.
A cancer diagnosis is a nightmare in and of itself. To add devastating financial burden onto the overflowing plates of patients and their families is simply unconscionable.
Fuck this noise. 
Advocate NOW. Advocate loudly, passionately, fiercely. 
It matters.

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Conversations About Death: I

Bob King Diaries; O7.o5.2o17

Visiting with Bob, discussing the recent Grenfell Tower fire in London…

Both Bob & I have strong emotional attachments to London. I lived there for a semester in college studying Art History, in my Long, Long, Ago.

Bob had been traveling frequently to England during the last 14 years prior to a health decline that prevented him from his normal routine of flying into Heathrow Airport 2 or 3 times a year. His partner for many years was a Russian woman named Nadia, who lived in England.

Bob and my mother had been married for 16 years, but they divorced in 1974.
Neither of them ever remarried, and it wasn’t until Bob & Nadia met that he had a love in his life that I can remember.

When the fire happened in Mid-June, we were both stunned and saddened by the tragedy. Such tremendous loss in a place that held precious memories for both of us.

Me: “What a terrible way to die… burning to death.”

Bob:  ((quiet pause)) “Yes.”
“I’ve been trying to think of what a good way to die might be.”

I am all about End of Life care, and making one’s own funeral plans long in advance. I’ve been trying to get Bob to discuss his wishes in the event of his death since the 1980s. It’s always been important to me.

It has always disturbed him.

Bob’s brother and sister-in-law died within 4 weeks of one another, in 2o15.
He participated in the periphery, as I was helping my cousins with Hospice care.

There was a combined small private family gathering for both of them on the same day; Aunt Donna’s remains were interred, Uncle Frank’s ashes were scattered along Parson’s Creek outside of Marcola, Oregon.

Marcola is a tiny unincorporated community outside of Springfield, OR. Which is outside of Eugene.
Bob, Frank, and Donna grew up together, attended the same high school.

Bob declined to attend the family gathering. He never did articulate the reason for this. I presume he was experiencing too much grief with the loss of both Frank & Donna in such a short period of time.

Bob has always thought me to be a morbid little creature. He loves me dearly, but he cannot relate to my need to connect with people during the precious last hours and days of life.

When he said he has been trying to think of a “good way to die,” I was caught off guard. Sometimes it’s hard to discern when he is serious vs joking.
Joking about death does not seem to be his thing, however.

He had three falls last week. This, he will joke about.

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Bon Voyage, Boy Child

I anticipated that yesterday might be the hardest day of my adult life.
Mr. Blitch and I took our 16 year old son to PDX at O2:30 for a flight to Panama.
HH’s first time out of the country (other than Canada, but really ~ Most kids from the PNW get up to Canada at some point).
A first very hard ‘Farewell’ for us as parents.

Our Boy is traveling with an amazing organization: Amigos De Las Americas.
Participants from across the US, and from 8 Latin American countries have been preparing for this adventure over the last many months.
The Core Components of the Amigos program include:
1) Training  (pre-departure training in health & safety, community development practices, personal leadership, and cultural understanding (about 100 hours for this training).
2) Language & Cultural Immersion
3) Youth-Led Community Service
4) Mentorship
5) Reflection & Continued Engagement
6) Health & Safety

Mr. Blitch and I have tremendous faith and trust with this group ~ enough so we were willing to let our One & Only pursue this major life journey. We were terrified, but also beyond proud of our kid for wanting to do this.

Group photo of the Portland Amigos participants at the farewell gathering:
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The Amigos program offers these young people the opportunity to travel to small or medium-sized communities where they will live with a host family, facilitate extracurricular activities for children & youth in their host community, and learn the process of planning and implementing a community development project.

2o17 Amigos project placement sites
* Dominican Republic (San Juan)
Theme: Civic Participation
* Costa Rica (Pérez Zeledón)
Theme: Environmental Sustainability
* Nicaragua (Madrid)
Theme: Civic Participation
* Nicaragua (Matagalpa)
Theme: Public Health
* Ecuador (Chimborazo)
Theme: Youth Entrepreneurship
* Paraguay (Guairá)
Theme: Public Health
* Colombia (Barranquilla)
Themes: Global Health, Engineering, Social Transformation
* Panama (Coclé)
Theme: Environmental Sustainability
* Panama (Azuero)
Theme: Environmental Sustainability (Azuero is where our boy, HH, will spend the next 7 weeks)

So, after months of participant training, and the amazing support and guidance we received from the Portland Chapter Amigos Volunteer Board members… we took our HH to PDX at 0300 for his departure.

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Part of what one signs on to as the parent of an Amigos participant, is that you say your Fare-Thee-Well at the airport, and then agree to an official No News Really IS Good News” policy. We know that HH will have one opportunity to call us, about midway through the 7 weeks he will be gone.
One phone call.
((Gulp))

There is one other individual who is missing HH tremendously. His sweetheart, Mz. Ivy.
She had been away visiting family in Idaho during the last several days prior to HH leaving the country. They had one last, quick, visit prior to his departure.
They got matching haircuts….

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And finally, as parents of the Amigos 2017 travelers, we are treated to occasional glimpses of the participants via Instagram. (“amigosazuero”)
I had one year of college Spanish, about 25 years ago, so I had to look up the translation for this amazing glimpse of my kid:

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We are very proud of our caring supervisors. Have left for their first week of route!
We are friends2017

HH is on the far right, sporting his treasured Billy Joel cap.

I cannot quite put my feelings or emotions into words at the moment.
An acutely uncomfortable mixture of pride, irrational fear, excitement, and terror. Something like that.

Holding my son, and all the other Amigos in my heart, and in the Light.

 

 

Waking Up to Sweet Things

Portland, Oregon. O6.2o.2o17  O4:45

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The Father’s Day 2o17 post had to go sit quietly by itself in the ‘Drafts’ holding area. It was just a wee bit too painful to tend to in real time.

So, Sweet Things will be the theme of today.

I woke up at O4:3o this morning. This may sound awful, but it’s a huge victory.
According to my CPAP machine, I slept a full 7 hours.
This is a big improvement from my normal 4 to 6 hours of nightly sleep.
And, I did not have any nightmares.
None that I remember, anyway. I will have to ask Mr. Blitch when he wakes up.
Apparently, sometimes, I wake him up talking or screaming in my sleep. Sometimes I am very well aware of this, sometimes not.
Oh, you don’t have this problem? Well. Lucky you.

What do I have nightmares about?
These things (in no particular order)…
1) my job
2) #45
3) my mother
4) my father
5) dance auditions from High School (circa 1983-1986)
6) that I don’t really have my bachelor of science in nursing (BSN) degree. There is still a college history class that I didn’t complete…
7) someone named ‘Jennifer’

So, today is already a great day!

Here is my better list – Sweet Things of Today:

1) My son HH and our neighbor, Max, slept out in the backyard last night. HH on the hammock, Max slept on the grass. There really are some sweet teenage boys in ‘Murica. I know of at least 7 or 8 of them. Good students. Musicians. Young men who are respectful towards girls and women. This does still exist.

2) My friend Julie’s daughter turned three yesterday. Her papa, Mr. Beastwood, gave her a rad pink, black, and white drum set for her birthday.
And, apparently, she learned that she’s going to be a big sister this winter.
Everything about this family is tremendously cool. Creative, super smart people. Julie and I used to work together at my previous job. She is one of the smartest women I have ever known. She taught me everything I know about Epic medical electronic systems. I could not survive or thrive at my current job as an Oncology Nurse Navigator if she hadn’t encouraged me to change my stubborn Luddite ways, and embrace the advent of medical technology.
When I graduated from the University of Portland School of Nursing ten years ago, my first job was as a night shift Bone Marrow Transplant nurse in a large teaching hospital. Paper charting was still a thing then. The noc shift nurses would grab calculators in the early morning hours to frantically add up each patient’s I’s and O’s (Intake/Output fluid balance) and ANC (Absolute Neutrophil Count) prior to the arrival of the Nurse Practitioners, Physician Assistants, and Hematologist-Oncologists at o6:00.
I was working the night when our Epic system “went live.” It was insanity. All managers on duty, people who had not worked through a 12 hour night shift in their lives. All the night nurses were snickering at them as they struggled to stay awake. Good times.
Anyway, Julie and her husband are outstanding people. They make life better though science and art. I truly, deeply, admire and appreciate them.
I mean, Holy Shit, had I been given a drum set when I was three years old? What might life have been like? What roads might I have traveled down? Kudos to them. Strong parenting. I am thrilled there will be a new addition to their family in the near future. Our world will benefit from this new arrival.

3) Mr. Blitch has gotten his groove back. After a couple years of limited time in the studio due to chronic back pain, parenting, “other work,” and me being away at work for 40 to 50 hours per week…. I went down to the studio this morning and found this:

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4) And then there was this…

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Self Soothing Behaviors

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My job is stressful. Pretty much every aspect of my life is stressful.
Every day I drive to work, wondering when I can fit in my next visit to my father.
~ I have him situated in a very nice adult family care home, which is somewhat conveniently located in the midst of a triangle formed by my house, and the 2 hospital locations that I bounce back and forth between.

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I’m a person who does better when I write things down. Words, drawings… mapping things out helps me get through life.
If I can somehow frame something within the boundaries of a piece of paper ~ there may be hope for me to survive another day.
Seems fitting that I ended up becoming an Oncology Nurse Navigator.

Non-pharmacological interventions for stress relief
Prior to heading out from my home in SE Portland, I make a trip to the backyard oasis that has been created by Mr. Blitch. I visit my Marigold (aka my therapy chicken), and snip some fresh Rosemary. I keep it in a glass in my car console.
The 18 mile car commute is eased by the smell of rosemary oil on my fingers.
Once I make it to my main job location, I can settle in ~ check my messages and the incoming referral line, make a few hard calls.

On my break ~ assuming there will be one at some point of the day ~ I head to the hospital Healing Garden.
I will always be rewarded there by some kind of tremendous beauty.

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Piano Tuning

I actually have 2 piano stories.
The first, will take me years to complete. It is excruciating; it makes me squirm and rage. So best left untouched for the now.

The other piano story, is one of friendship, and heart, and community. A much more pleasant and easily digestible tale.

We are (?) care taking, housing, no: blessed with, the care of a piano belonging to a friend.

We just had it tuned. And while I appreciate it and cherish its presence in our home every.single.day, I am feeling inspired to sing its praises anew.

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I played piano when I was a child… The comfort and joy in the playing weren’t there for me.
I viewed my practice as a chore; similar to the way I view a garden (flower, vegetable or otherwise): it’s a place you are sent to toil & pull weeds. Not a sanctuary or place of growth and joy.

Our son, Harrison, began playing about a decade ago. We found a teacher for him who has been a prefect match. Music theory, scales, chord progressions, are all covered as they should be. But from there, the sky is the limit. The songs they play are chosen together ~ whatever suits the mood. Ragtime. New Orleans jazz. Indiana Jones movie soundtrack music. The Beatles.
Just to name a few. A very few.
Recent musical obsessions of my son’s have included Stevie Wonder, Elton John, and now: Billy Joel.
To hear the songs of these artists played in our living room, by my son, on this amazing piano… Makes my heart explode. In a good way.

The piano belongs to a family friend, a member of my Quaker community. I met this woman when I was in my early 20s, long before I met Mr. Blitch. The piano is one she had in her home when her sons were young, and they had a spacious house with plenty of room. Two decades later, her sons are grown, living far away in places where they can’t have the piano. She also moved, to a beautiful home in the SW hills of Portland. There is a steep and treacherous walkway from the street to the entrance of the house, not a great place for this beautiful Baby Grand.

When Harrison was little, we were renting a small upright piano. My friend learned that we were making monthly payments that were hard on our budget right around the same time that she needed to move her piano into a “foster home.”

So we have this amazing instrument. We treasure it, and appreciate its presence. We’ll keep it until one of her sons moves somewhere where they would be able to enjoy it again themselves.

And we have Jeff Baxter. Harrison’s piano teacher for the last 8 years. Harrison is 16 now, so Holy Cow ~ half of our kid’s life has been touched by this amazing person.

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Jeff has his own son now, a super fun kiddo with the most excellent name of Arlo Baxter.
This is our community, our tribe. We raise our kids in this sketchy, sometimes terrifying world ~~ and music provides comfort, sanctuary, hope.

This is how we teach our children to survive. Music heals. Inspires, enriches.
Lullabies, hand clapping songs, symphonies, folksongs, requiems… All phases and stages of human life are accompanied in some way by music.
Without it, what would be?

Feeling tremendously grateful for so many things. Making every day a celebration.

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