ENCORE #122! – The Wicked Witch of the West Is DEAD! – Thoughts On Continuing Life As A Breast Cancer Husband

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 first appeared in August 2013.

We started celebrating our 26^th wedding anniversary this past week.

“Started celebrating” because as a teacher, my paycheck “runs out” at the end of the summer, a few weeks before we start work again. This has been true for the past 26 years just as it is true this year.

Because of that, we’ve never had what you’d call a “spectacular” anniversary. Don’t get me wrong, we’ve had many GOOD times! Went to a local dinner theater last year to see the musical XANADU; did a “blockbuster movie” watch the year APOLLO 13 and EXCALIBUR came out topped with supper at the then brand new local Champps. For another we spent a night at a Bed & Breakfast in Stillwater. This year my wife had a quiet day at home while I hurried north to pick up my daughter-in-law and grandkids to ferry them to a doctor appointment – my granddaughter had pneumonia. We had takeout that night from our favorite Chinese restaurant and watched OZ THE GREAT AND POWERFUL. The addition though is that with some old and dear friends of ours, we’ll be spending the Thanksgiving holidays in Wild Eagle, Wisconsin at a resort for a week! That will allow us to celebrate in the style we should have been celebrating all along.

So what does all this have to do with breast cancer?

While it may not be obvious to you, it is to me: we get to celebrate our 26^th wedding anniversary two and (almost) a half years after a breast cancer diagnosis! In 1911 the diagnosis would have been a death sentence. In 1961, she would have been treated with “stone knives and bearskins” with drugs that would have made her violently ill and miserable – and probably wouldn’t have made much difference at all.

Here in the second decade of the 21^st Century, the treatments she received and continues to receive cured her of the cancer and given us a chance to celebrate our...well, when I exclaimed that we could be together for another 26 years, my wife pointed out that I would 90 years old by then. Hmmm...I guess if that’s God’s plan, then so be it. But 90? Whew – that DOES seem old.

At any rate, in the here and now, the point is that we’re planning an extended celebration of our 26^th Wedding Anniversary and those plans rest firmly on the basis of the pain, treatments, research, advances, and drug regimens my wife has experienced since the original diagnosis.

So “...let the joyous news be spread, the Wicked Old Witch at last is dead!” (And no, I DON’T mean the Wicked Witch of the East with the Ruby Slippers – I mean the melted remains of her sister – the Wicked Witch of the Cancerous West!)

Let the celebration continue!

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

Encouragement (In Suffering, Pain, and Witnessing Both…) #9: Strength Through Lymphedema

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…

I was looking for encouragement for people who suffer lymphedema; in particular those who suffer from the condition because of lymph node removal due to cancer; specifically breast cancer.

I can’t find anything…

Is that surprising? I don’t know. Lymphedema doesn’t have a “wow!” factor, I think that might be the problem.

Everybody cringes when they have to talk about cancer. Its many different colors and the fact that it can strike anyone, anywhere, whether multi-millionaire movie star to the poorest of the poor on Earth inspires countless responses from terror to story. Virtually everyone has a “cancer” story, and when the diagnosis comes, people flock to support and attempt to alleviate the suffering of both victims and those close to them.

Lymphedema doesn’t inspire the same response at all. In fact, lymphedema inspires such an insipid response, that until very recently, medicine consigned the condition as “something you’re just gonna have to live with; here’s a compression garment.”

That has changed. During recent sessions with a lymphedema specialist (which are very few and very, very far between – because being a lymphedema specialist wasn’t really a “real career”…), we received new hope that lymphedema IS curable.

But even in recent history, a diagnosis of lymphedema was met with a shrug: “…the history of lymphedema treatment begins a mere three decades ago. Before the RECOGNITION that lymphedema was a treatable condition, doctors just laughed at it, shrugged their shoulders and said, ‘Oh, well.’

“That was mostly because the doctors were males and the victims of secondary lymphedema caused by node excision in the treatment of breast cancer was a ‘woman’s problem’. I imagine it would have received a bit more attention from the medical community if cancer node excision had caused the shrinkage of another extremity near and dear to the heart of every man...

“At any rate, with the founding of the National Lymphedema Network and their pioneering work in the treatment of lymphedema, more and more doctors are recognizing that not only is lymphedema treatable – it NEEDS to be treated rather than ignored.”

I’ve written on the topic of lymphedema eleven times since starting this blog. I have found virtually nothing regarding encouragement. The 2012 (in case you can’t do subtraction, that’s seven YEARS ago) article linked below in Resources expresses this response precisely: “Voices from the Shadows: Living with Lymphedema”.

Lymphedema is a shadow disease, disregarded mostly and certainly not the subject of super-star fundraisers! Kathy Bates, the actor now best known as being Amy Farah Fowler’s mother on the recently concluded BIG BANG THEORY, is a lymphedema advocate. I’ve linked to her recent appearance on WENDY, the Wendy Williams talk show where she discusses her life, including her experience with lymphedema – https://www.youtube.com/watch?v=iWcZqQXBOOM.

In Voices from the Shadows, participants were encouraged to “…write about your deepest thoughts and feelings about how lymphedema and its treatment has affected you and your life. Really let go and explore your deepest emotions and thoughts.” By the same token: “…some positive feelings were also present. These positive feelings centered around perceived support from other people and strength gained from belief a higher power assisted them in coping with this chronic disease. Other people and God appear to have a positive, fortifying, effect on breast cancer survivors with lymphedema and partially fill the void they experience from societal marginalization. The women in this study offered moving stories of the encouragement of friends and family members, coupled with their acceptance and willingness to help in any way.”

So, some encouragement from the study:

“I have wonderful friends and family. They take me as I am and are very concerned about what I call my leftovers from cancer. I don’t think I could ask for better people in my life.”

“My husband has been very supportive with this. He wants to know about it as well, and so do my friends and family. I share with others about lymphedema who are going through Breast Cancer, and I hope that I will help others.”

“I am truly blessed to be able to somewhat go on with my life and my family dealing with what God has dealt me. He doesn’t waste your pain. There is life after cancer with lymphedema”.

“I am living with this condition everyday but not as an invalid but as a survivor. God spared my life and lymphedema was part of the package. That’s OK when you consider the alternative.”

We, as friends, family, and even as a community of those that have been touched by lymphedema, can play an important role in encouraging those who suffer from lymphedema…

I have learned that I can do MORE to support my wife and here publicly promise to do more!

Resources: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3172392/

Image: http://www.quoteambition.com/wp-content/uploads/2017/04/encourage-quotes-destiny.jpg

ENCORE # 121! – (It IS a) Big Hairy Deal!

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 first appeared in November of 2011.

It’s been my experience that men don’t usually care that much about their hair. It’s also been my experience that hair is VERY important to women.

That’s why the most obvious result of chemotherapy – alopecia – has such a profound impact on women and the men who love them. Women who lose their hair are OBVIOUS to everyone who looks at them. They are noticed; they stand out in public in a way a bald man will never stand out. We admire the men even – Kojack, The King of Siam, Captain Jean-Luc Picard are all heroes and we don’t even notice their shiny heads. But bald female cops, Queens, and starship Captains would be so odd that most of us wouldn’t even remember the rest of the record, reign or voyage.

As men with wives, girlfriends and mothers who will or who have lost their hair because of breast cancer, we stand in an unusual place.

We have to be honest encouragers.

“Honey, how does this wig look on me?”

“Is the scarf the right color for my skin?”

“If I wear a baseball cap every day, will you still think I’m sexy?”

“If I don’t wear anything on my head in public, will you be embarrassed?”

The first response to each question is initially: “It looks fine, dear”, “It looks fine, dear”, “Of course I will”, “Nothing you could wear or not wear would embarrass me”.

The problem with the response is that our loved ones are our loved ones and a diagnosis of “stupid” does NOT go hand-in-hand with a diagnosis of breast cancer. They know when we are patronizing. I learned the hard way not to patronize my wife. When she asked one of the questions above, I had to take my time and think. I had to consider my answer not because I wanted to be right, but in order to battle the deep-seated desire to avoid inflicting any more pain on a person worn out from the constant fight against cancer.

So I studied her as she modeled the wig, scarf, hat or bald pate.

Honestly responding, I gave my opinion. When it was honest, it gave her FEEDBACK and while the ultimate choice was still hers, she most likely felt that my response – especially before her hair started to grow back – was honest and another data point in her effort to decide what to wear that day.

Ultimately, I could do nothing more important that to be consciously HONEST!

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

ALZHEIMER’S RESEARCH RIGHT NOW! #4: Me, “A Pig Tale”, and My Father’s Alzheimer’s – An Unexpected Sygyzy

From the first moment I discovered my dad had been diagnosed with Alzheimer’s, it seemed like I was alone in this ugly place. Even ones who had loved ones suffering in this way; even though people TALKED about the disease, it felt for me like they did little more than mumble about the experience. Not one to shut up for any known reason, I added a section to this blog…

Every month, I’ll be highlighting Alzheimer’s 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: “Study identifies gene variant as potential drug target…”

A study published by the National Institute on Aging, indicates that recent research identified a gene in a huge family that codes for early onset Alzheimer’s. A woman from a family whose “genetic data from a Colombian family with more than 6,000 living members”…found that those “who carry a rare gene mutation called Presenilin 1 (PSEN1) E280A, have a 99.9% risk of developing early-onset Alzheimer's disease.”

While this is one of those “sad-but-true” stories, the woman in question didn’t develop Alzheimer’s symptoms until she was in her seventies. Sad again, and true…BUT…the members of her family who had the odd gene combination without exception developed Alzheimer’s symptoms WHEN THEY WERE IN THEIR FORTIES.

It's a rare condition, and again, sad-but-true; but the research team didn’t let the story lie. They tested her and found that where you and I and all the rest of the humans in her family had a single gene called APOE3 Christchurch (APOE3ch) gene variant she also had two copies of it. She was the only one – and she was the only one who didn’t have early onset.

What does this “magical gene” do? According to the study (gibberish first, then I’ll translate the doctors) “…the APOE3ch variant may reduce the ability of APOE to bind to certain sugars called heparan sulphate proteoglycans (HSPG). APOE binding to HSPG has been implicated as one mechanism that may contribute to the amyloid and tau protein deposits that destroy the brain.”

First, APOE stands for APOlipoprotEin. The “lipo” part means “fat”. That’s the middle of this thing. It is a protein associating with lipid particles, that mainly helps with the transport of fat between organs blood plasma and liquids between cells called “interstitial” (just a fancy word for “the place in between”). It’s a very important component of blood plasma and it’s involved in fat production, conversion and clearance. All food things. The problem comes when APOE accidentally hooks up with sugars called heparan sulphate proteoglycans (HSPG). The research seems to point to this hook up as suddenly stopping the APOE from moving the fats around and instead helping to form plaques and tangle deposits you read about that eventually destroy the brain of an Alzheimer’s patient.

OK – all that is said and done. You maybe understand this line of research better.

At any rate, on to an eerie happening in my own life.

I had a science fiction story published in ANALOG about 20 years ago called, “A Pig Tale”. In it, my main character is experiencing a crisis – but she doesn’t realize that her father is as well.

In a really strange turn of events, I wrote this story long before my father was diagnosed with Alzheimer’s; even longer before I found out about it and became the secondary caregiver for both Mom and Dad (they were in an assisted living facility, then moved into Memory Care); I was the contact, transportation, and eventually the one who arranged Dad’s funeral when he died a few years later than Mom, and pretty much a different man than he was before Alzheimer’s began to whittle away the personality that defined him.

So, if you’d like to read the story, the link is below. If not, that’s fine. But I’ve been thinking about doing another story set at the same time; different character (maybe), but take a look at the issue from “the other side”, after making my way through the experience my parents had.

Who knew that the fictional drug in my story was going to be the object of a billion-dollar search.

Story Link: http://theworkandworksheetsofguystewart.blogspot.com/2018/05/a-pig-tale-by-guy-stewart-analog.html

Resources: https://www.sciencedaily.com/releases/2019/11/191104112803.htm,

Image: https://www.meduniwien.ac.at/web/fileadmin/_processed_/e/1/csm_shutterstock_142671010_4683b6bf13.jpg

ENCORE #120! – COMING SOON – I, Robot Nanites Fight Breast Cancer!

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 first appeared in March of 2018 and got  A LOT of hits!

Most of this article is behind a paywall, but reading the abstract (science term that sort of means the “summary” of what the paper’s about), I can see the application possibilities. I’d LOVE to read it in full, but NATURE makes its money selling the right to read the papers for absurd amounts…

In the online magazine, Science, an online science news magazine, they translate the abstract into reasonably understandable English (http://www.sciencemag.org/news/2017/08/nanomachines-drill-holes-cancer-cells)

Even so, it’s still pretty heavy stuff, so I’m going to take a stab at it here.

The basic idea is that by using chemicals, light, and even sound, scientists have created clusters of atoms that hang together and perform in particular ways. It sounds wild, but if you think of a all the parts it takes to run your car – or even more simply, your bicycle – it’s nothing radically different. It’s just the scale that’s amazing and the tools they use.

By the way, the things they create – they’re called nanomachines. They first four letters are Latin and means “one-millionth”. So, these nanomachines (if you've ever seen Will Smith’s movie, I, ROBOT, they used “nanites” (another word for namomachines and WAY easier to say), to destroy the crazy computer VIKI.) can be programmed to do certain things. Sort of like a set of screwdrivers. I can’t use one of those weird square-nosed ones to take out a Phillips screw. I can certainly try, but it strips the head and makes the job of taking out a zillion times more work.

What nanite scientists do is count on how atoms attach to each other and set them up so that they can attach together in the right way. In other words, that can set up a nanite so that it’s attracted to a breast cancer cell – in the nanoworld, a breast cancer cell will have certain chemicals around it and on its surface. The nanite looks for the “smell” of the cancer cell and then attaches to it.

They’ve also given their nanite a sort of “drill bit” on one end – a tail on one end to get around, a drill bit on the other to dig into a cancer cell. Wrapped inside of the nanite is a little surprise for the cancer cell – a molecule of chemo drug. Once it’s drilled through the wall of the cancer cell, it shoves the chemo in, then shuts down, its weapon delivered.

Zillions of these little machines seek out and destroy cancer cells, so instead of the chemo taking out hair cells along with the cancer cells, ONLY the cancer cells get zapped.

That’s the theory, and now these articles detail how scientists have made it work in the lab. The next step, of course, will be to see if it works in something alive – usually mice – and finally seeing if it will work in the complex universe (remember how small nanites are – 50,000 of them could line of end-to-end and just make it across the width of a Human HAIR! If you lined up 50,000 people, laying down, feet to head, that would stretch 52 miles) that would be a Human body.

So, we shall see!

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