Saturday, June 30, 2018

Encouragement (In Suffering, Pain, and Witnessing Both…) #3: The YOUNGEST Breast Cancer Survivor…


The older I get, the more suffering and pain I’ve experienced; and the more of both I stand witness to. From my wife’s (and many, many of our friends and coworkers) battle against breast cancer; to my dad’s (and the parents of many of our friends and coworkers) process as he fades away as this complex disease breaks the connections between more and more memories, I have become not only frustrated with suffering, pain, and having to watch both, I have been witness to the suffering and pain among the students I serve as a school counselor. I have become angry and sometimes paralyzed. This is my attempt to lift myself from the occasional stifling grief that darkens my days…

As breast cancer affects men as well as women, sometimes we forget that not only are there young women who are diagnosed, there is also the YOUNGEST woman diagnosed with rare form of breast cancer.

Here’s the PEOPLE Magazine article with an embedded short video:

Here’s a standard news report Youtube:

Watch them and weep; then allow yourself to be inspired.


Saturday, June 23, 2018

ENCORE #90! – After Tamoxifen and Anastrazole…

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry appeared in December of 2015.

My wife is coming up on FIVE YEARS (currently past SEVEN YEARS) post-mastectomy; five months later will be five years post chemotherapy.


In it, the research team discovered that “although both drugs were safe and effective, and had no detrimental effect on overall quality of life, there were some differences in the type and severity of symptoms the women experienced with each treatment, and these especially differed by age.”

The differences they say, are in the details. So what does this mean?

In women under 60, “tamoxifen [patients] complained of more severe hot flashes” as for  those taking anastrozole, they found that they had “greater severity of vaginal dryness and muscle and joint pains; hot flashes, weight problems, vaginal symptoms and gynecological symptoms”

Neither drug had any significant effect on women over 60; and overall, “The research also indicated that symptoms such as depression and fatigue were no different in comparison between the two drugs and did not increase in patients during the five years of treatment.” Of course, this implies that depression and fatigue are going to be common factors in post-treatment women, no matter their age.

Drug treatment for women with breast cancer is going to be brutal. However, this study simply shows that doctors need to choose wisely when prescribing the drug to patients of different ages. Better still, PATIENTS in-the-know can make sure that their providers are making the best choices for them.

Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg

Saturday, June 16, 2018

BREAST CANCER RESEARCH RIGHT NOW! #62: My Changed Body© -- Research Into Journaling To Help Create Self-Compassion In Breast Cancer Survivors


From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…

Every month, I’ll be highlighting breast cancer research that is going on RIGHT NOW! Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: Reducing Body Image–Related Distress in Women With Breast Cancer Using a Structured Online Writing Exercise: Results From the My Changed Body Randomized Controlled Trial

“To help address body image issues in women who have been treated for breast cancer, researchers developed a program called My Changed Body, a web-based structured writing exercise designed to promote self-appreciation and self-compassion.”

Another site notes, “Self-compassion interventions are a new method for reducing distress related to breast cancer treatment.”

As I was (and still am in a different capacity) the main caregiver, I can only speak from my observations. I can confirm that following the horrors perpetrated on her in the name of destroying the breast cancer, my wife still struggles with a poor self-image. It sounds horrible, and for her it IS, and I will confess that I have no idea how to help her through this.

Clearly though, she’s not alone.

The ideas of therapeutic writing aren’t new – the goodtherapy website entry notes, “Journal therapy originated in the 1960s with psychologist Dr. Ira Progoff's Intensive Journal method. With his developments, the therapeutic potential of journal writing moved into public view. Prior to this, the main function of journal writing was to record events and experiences from a narrative point of view. Keeping a diary, though most likely beneficial to its author, was not seen a therapeutic process.”

There is even a training program for therapists that leads to a certification in a number of related fields/skills: “Incorporated in 1983, the International Federation for Biblio/Poetry Therapy sets standards of excellence in the training and credentialing of practitioners in the field of biblio/poetry therapy and authorizes qualified individuals to practice as mentor/supervisors…[and] awards the designations of Certified Applied Poetry Facilitator (CAPF), Certified Poetry Therapist (CPT), and Registered Poetry Therapist (PTR) in acknowledgement of application to and completion of the approved training program.”

There are nuances in the field as well:  [besides] poetry therapy and applied poetry facilitation, [there are also specialties like] journal therapy, bibliotherapy, biblio/poetry therapy, and poetry/journal therapy [which] are all intended to reflect the interactive use of literature and/or writing to promote growth and healing.”

Who knew? Certainly not me, a writer…

At any rate, as far as I can tell, the My Changed Body program isn’t available anywhere, and wasn’t available to anyone except the study participants.


From The Breast Cancer Site in a review of the Australian study (https://blog.thebreastcancersite.com/write-for-healing/): “The women had the same level of body-image stress before the study, but researchers found distinct differences after the study at the 1-week, 1-month, and 3-month assessments. Women who had responded to the My Changed Body prompts had improved body appreciation at all three assessments as compared to the women in the control group. Women with lymphedema who responded to the My Changed Body prompts had the largest improvement in anxiety and self-compassion metrics.

“Researchers felt that it was especially encouraging that women were able to achieve these improvements using their own writing, without the help of a doctor or specialist.

“The study is not the first to show that writing can improve health and help people heal, but the My Changed Body program was designed to specifically help breast cancer patients harness the power of their writing to positivly impact their own emotions about their bodies.”

Interesting, to say the least. I wonder how someone could go about starting the site up for real? What do you think, Honey?


Saturday, June 9, 2018

ENCORE #89! – Claudia Alexander dies at 56; JPL researcher oversaw Galileo, Rosetta missions by Elaine Woo (LA Times)

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry appeared in August of 2015.

Colleagues at the Jet Propulsion Laboratory said Claudia Alexander was particularly keen on engaging the public in space science. In her spare time, she wrote two books on science for children.

Claudia Alexander, a NASA scientist who oversaw the dramatic conclusion of the space agency's long-lived Galileo mission to Jupiter and managed the United States' role in the international comet-chasing Rosetta project, died July 11 at Methodist Hospital of Southern California in Arcadia. She was 56.

The cause was breast cancer, said her sister, Suzanne Alexander.

During nearly three decades at NASA's Jet Propulsion Laboratory in La CaƱada Flintridge, Alexander was known for her research on subjects including solar wind, Jupiter and its moons, and the evolution and inner workings of comets.

JPL scientist Claudia Alexander, pictured in 2014, was the U.S. manager for the international comet-chasing Rosetta project. (Gina Ferazzi / Los Angeles Times)

She was the last project manager of Galileo, one of the most successful missions for exploring the distant reaches of the solar system. Alexander was leading the mission when scientists orchestrated its death dive into Jupiter's dense atmosphere in 2003, when the spacecraft finally ran out of fuel after eight years orbiting the giant planet.

Most recently, she was Rosetta's U.S. project manager, coordinating with the European Space Agency on the orbiter's journey to rendezvous with the 67P/Churyumov-Gerasimenko comet as it circles the sun.

Colleagues said Alexander was particularly keen on engaging the public in space science.

She spearheaded Rosetta's efforts to involve amateur astronomers through social media and recognize the value of their ground-level observations of the spacecraft's path toward deep space. In particular, she spurred the creation of a Facebook group where members of the amateur community post comments on their sightings and interact with her and other scientists.

“Claudia's vision was to engage and empower the amateur community via various social media… a new wrinkle on the concept” of public engagement in NASA’s missions, said Padma A. Yanamandra-Fisher, a senior research scientist with the Space Science Institute who coordinated the outreach.

"I was a pretty lonely girl. I was the only black girl in pretty much an all-white school and spent a lot of time by myself -- with my imagination." - Claudia Alexander

She "had a special understanding of how scientific discovery affects us all, and how our greatest achievements are the result of teamwork, which came easily to her," JPL director Charles Elachi said in a statement. "Her insight into the scientific process will be sorely missed."

Alexander was born in Vancouver, Canada, on May 30, 1959. She moved to the Silicon Valley with her family when she was 1 and grew up in Santa Clara. Her father, Harold Alexander, was a social worker and her mother, Gaynelle, was a corporate librarian for chip-maker Intel.

As an African American in a predominantly white community, Alexander felt isolated. Writing became a refuge for her. According to the obituary: 'She wanted to study journalism at UC Berkeley, but her parents "would only agree to pay for it if I majored in something 'useful,' like engineering," she said in an interview for the Rosetta website.' Fortunately, her parents steered her...

During college she became an engineering intern at NASA's Ames Research Center near San Jose. But she found herself drawn to the space facility and visited it as often as she could. Her supervisor eventually arranged for her to intern in the space science division.

She went on to earn a bachelor's degree in geophysics at UC Berkeley and a master's in geophysics and space physics at UCLA. At the University of Michigan, she wrote her doctoral thesis on comet thermophysical nuclear modeling and earned a PhD in atmospheric, oceanic and space sciences.

In 1986, she joined JPL as a team member for Galileo, which was still years from launching.

In 2000, she became Rosetta's U.S. project scientist at the relatively young age of 40.

"She was always looking to improve the project and make things flow better," said Paul Weissman, an interdisciplinary scientist on Rosetta. "Europeans can be difficult about collaborations. Claudia would get people to open up and work together."

In 2003, she became Galileo project manager, guiding efforts to destroy the venerable spacecraft to prevent it from accidentally crashing into and contaminating any of Jupiter's moons.

She had also served as a science coordinator on the Cassini mission to Saturn.

In her spare time, Alexander wrote two books on science for children and mentored young people, especially African American girls. "She wanted children of color to see themselves as scientists," her sister Suzanne said.

A fan of the steampunk movement in science fiction, Alexander wrote and published short stories in the genre. She wore the Victorian-style clothing associated with steampunk fashion when she taped a TED talk on how to engage youth in math and science. Watch it here: https://www.youtube.com/watch?v=pxzkw0EYHIw

Alexander was never married and had no children. Besides her mother and sister, she is survived by a brother, David Alexander.

Copyright © 2015, Los Angeles Times


Saturday, June 2, 2018

GUY’S GOTTA TALK ABOUT…Alzheimer’s #16: Seeing, Knowing, Hallucinations, Shame, Delusions, Guilt – a Real MISHMASH!


Dad’s diagnosis of Alzheimer’s stayed hidden from everyone until I took over the medical administration of my parents in 2015. Once I found out, there was a deafening silence from most of the people I know even though virtually all of them would add, “My _____ had Alzheimer’s…” But there was little help, little beyond people sadly shaking heads. Or horror stories. Lots of those. Even the ones who knew about the disease seemed to have received a gag order from some Central Alzheimer’s Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this part of my blog…

Aside from the conversation I had last night trying to gently remind Dad that Mom had died two years ago; aside from the conversation yesterday afternoon asking Dad questions about the “guy I was working with today. He said he’d call but I don’t remember who he was or what we did…”; aside from the daily calls asking where his dad is or for “June’s phone number”…I haven’t noticed any real changes in Dad’s memory or in his experience with hallucinations and delusions… *sarcasm*

First a couple of definitions: “[An hallucination is]…a sensory experience that is imagined. When someone with Alzheimer’s has [one, the] person sees, smells, hears, tastes, or feels (or any combination of those)…something that isn’t really there.” There’s a difference between this and a delusion: “…a delusion involves a set of false beliefs. An Alzheimer’s patient…may be overwhelmingly suspicious of the people around them…”

I haven’t seen Dad with delusions often, though that issue crops up occasionally. It’s usually easiest if I go to him and we just sit around and shoot the breeze. He relaxes, knows I’m around and can get there fast if I need to, and he recognizes me both by face and voice. Seems to calm him down. I’m sure my siblings have the same experience – I’m also sure that the people who work there DO NOT have that experience.

As for the hallucinations…o, man…I deal with that on a daily basis, sometime even hourly. The site highlighted below had this to say, “…people with Alzheimer’s continually struggle to make sense of the world in the face of their declining cognitive function, and it’s a profoundly lonely and isolating experience.”

Dad’s sense of isolation is what I’ve been dealing with A LOT lately. I know we’re doing something right though, because, “The Alzheimer’s Society report on loneliness found more than one in 10 people spoke to friends of family face-to-face less than once a fortnight. This type of contact is important because these conversations provide visual and sensory clues which can help them form memories more easily.” We all talk to Dad often, I call him every day; I’m sure the others do as well – or close to every day. So there’s one good thing.

“As people get older, they may find that their friends and family move away, go to live in residential homes and pass away. This can lead to a shrinking of their social circle and less contact with people. On top of that, if they don’t have a particularly meaningful relationship with their neighbor – which can be common in larger towns and cities – it can lead to loneliness. Nearly a quarter of people with dementia admit they speak to their neighbor less than once a month.”

I think this has been hardest for Dad…my mom was THE quintessential socialite. She was friends with everyone; she was thoughtful, very funny, and adventurous – she loved “going places” and she and Dad travelled extensively after they retired. But MOM was the one who socialized. Dad pretty much sat in the corner and if someone came to talk to him, fine. But someone didn’t…well, he griped about how mean people are. He does that to me now. Everyday. Always.

The thing is, is that I feel PERSONALLY bad because of it; like I’m somehow causing Dad’s loneliness or something by putting him in the memory care unit; by taking away his car; by not doing “enough” for him. I have NOT dealt with that, though I figure the feelings are somewhere between guilt and shame. I also realize that I’m not only not responsible for how Dad feels, I can’t DO anything about it…even if I took him on a wild day party (like last year in April when my son and his family were in the US on a month-long leave from their post), he doesn’t remember it. In fact, if I’d taken him drinking last night with all of his old buddies (half of whom are dead), he STILL wouldn’t remember today what we did!

OK – so I go back to what I discovered a long time ago: We can no longer make memories, we have to make MOMENTS.

And I have to deal with my shame/guilt thing…ready, set, go…