Category: Health/Medicine Page 1 of 6

If someone discovers a new cure for cancer, this would be worth mentioning, and you can anticipate those kinds of stories.

Luki & the Lights robot Luki from the Oscar-eligible animated film

This ten and one-half minute short, “Luki and the Lights” came to my in-box. I watched it while knowing that there would be no happy ending to this story. Here was the synopsis provided:”Toby Cochran’s LUKI & THE LIGHTS shares a charming and touching story of a robot named LUKi who is slowly starting to malfunction. But even with the struggles ahead, LUKi demonstrates unwavering resilience, painting a vivid portrait of what it means to truly live and the power to find light even in the darkest of times. This poignant animated short was made to raise awareness of ALS as well as to create a platform for children to understand what the disease is. It has qualified to be considered for the 2025 Oscars®.”

ALS ON FILM:

Sascha Groen and her husband, Anjo Snijders, were searching for a tool to help explain his recently-diagnosed terminal disease to their children. Director Toby Cochran is the founder and creative force behind Big Grin Productions. He has 20 years of animation and production expertise. Cochran’s roles span story artist, writer, and director and extends across various entertainment realms, including games, commercials, live-action, and animated series. His distinguished career includes collaborations with studios and companies such as Netflix, Marvel, Disney, ReelFX, Discovery Channel, Bill & Melinda Gates Foundation, Nestle, Lego Universe, and Kuku Studios.

THE SHORT FILM “LUKI & THE LIGHTS“

The decision was made to have an active, charming upbeat robot named Luki shown being struck by ALS. Do robots get ALS? While I applaud the idea of helping children understand this horrible and debilitating disease, a robot is made by man and can be fixed by man. People are different from robots. Currently, the ability to “fix” a person who has ALS is beyond the reach of science.

This 10 and 1/2 minute short has won over 20 awards and claims the distinction of being “the first ever animated short film featuring the first-ever animated character to have ALS.” This sounds good until you stop and think that the “character” is not human, so it (he) could perhaps have been “fixed” by a trip back to the robot factory? Not the case with human beings.

To date, the film has taken home twenty awards including the “Audience Award” at the Florida Film Festival, the “Audience Choice Award” at Indy Shorts International Film Festival and Siggraph Electronic Theater, the Children’s Audience Award at Animayo Gran Canaria, “Best Animated Short” at the Phoenix Film Festival, and the “FilmSlam Student Choice Award for Best Short” at Cleveland International Film Festival.

Producer Adrian Ochoa is an award-winning producer, prior to joining Big Grin, Adrian worked at Pixar Animation Studios, PlayStudios, and Penrose Studios. His credits include Toy Story 2, Monsters Inc., Finding Nemo, The Incredibles, Cars, Wall-E, Cars 2, Monsters University, Inside Out, and The Good Dinosaur. He also worked on various shorts including Cars Toons, live-action shorts, and the animated short Day and Night. He’s also produced over 45 mobile games, including three with Shaquille O’Neal and the award-winning VR animated short film Arden’s Wake.

Throughout the film, there is charming music, but there is no dialogue as such. More accurately, what we have as “dialogue” is mostly incomprehensible, just like the disease itself.

ALS PRIME DOCUMENTARY: “NO ORDINARY CAMPAIGN”

Back in 2022, Katie Couric produced an ALS documentary about the struggle of Brian Wallach, a worker in the Obama campaign who was a successful Chicago attorney at the time he was diagnosed with ALS. Brian was only 37 years old and had just returned to home with a new child with his wife, Sandra Obrevaya. (They have two children.) Chris Burke, a friend who was a filmmaker, set out to make a film about Brian’s struggle as the couple are thrust into the medical system where they must advocate for themselves and, hopefully, for others.

By the time this film came out the “Ice Bucket Challenge” was 8 years in the rear view mirror (2014). When diagnosed in 2017, Brian was given only 6 months to live. The couple chose to publicize Brian’s struggle to continue to survive by promoting a bill to fund research into this killer disease. He got some help from former President Barack Obama, who appears in the film. It was during Obama’s campaign in 2008 that Brian and Sandra had met while working to help elect our first Black president.

Normally, ALS kills you within 2 to 5 years. Brian has been fighting the good fight for the past 6 years. He is in the top 20% of survivors. From their home in suburban Chicago, the couple has seen their efforts to pass “Act for ALS” turn into $100 million for research for the next 5 years. Since Brian was diagnosed in 2017,and the law passed the Senate unanimously on December 16, 2021, is time running out on the additional funding to solve this huge problem?

If you are as sympathetic to this fight and for funding to continue as I am, you should follow up the 10 and 1/2 minute animated ALS short”Luki & The Lights” with the longer documentary. It is a Prime Video documentary entitled “For Love and Life: No Ordinary Campaign.”

My Excellent Adventures Between July 15th and August 15th, 2024

By Connie Wilson

On August 18, 2024

In Editorial, Health/Medicine, Humor and Weird Wilson-isms, Of Local (Quad Cities') Interest, Science and Medicine, Texas, travel

The offending tree.

My “weekly” vow for WeeklyWilson has now collapsed under the weight of a series of random events.

First, there was the tornado, an EF1 that hit our court street in East Moline, Illinois on Monday, July 15^th.

My spouse had just made an ice cream run to Whitey’s in Moline, which was closing down because of the bad weather. He went to the Dairy Queen and secured 2 Blizzards and was just in time to enter our court as a huge tree went down, taking with it all the power to about 30 houses. It was 7:37 pm. We would not have power again until late Thursday, July 18th.

I went outside to take pictures of the 6 trucks that showed up to try to restore power to our court street (there were 8,000 people without power). The heat index was 106.

One truck broke and another had to be sent. Soon, six were there. Then the tree people managed to pull all of the wires out of the house 2 doors down while cutting up the large tree.

My neighbor, Norma, saw me outside and came outside to chat, which was a good idea until I passed out on her driveway because of the heat (see article about the Gold Coast Art Fair). She went to get my spouse (who was taking a nap and not fully dressed) and I struggled to my feet USING MY FRAIL KNEES, made it into our garage, and promptly passed out a second time.

The house, which had been without power since 7:37 p.m. on Monday night, was fairly hot, so I went to the basement and drank water and was fine thereafter, except that we had no power and it was HOT inside our house. This was only Tuesday, July 16th.

Tuesday night we tried sleeping in the basement. The hide-a-bed in the basement is very old and it was very uncomfortable. It was also very difficult to get out of it and make it to the bathroom in the middle of the night, wielding only my trusty flashlight and winding my way through laundry baskets.

By Wednesday, July 17, we both agreed that we would seek out a motel.

In getting up from the driveway and the garage concrete as quickly as I could, to save face (if not knees), I had done a number on my osteo-arthritic knees. We sought out a motel with a jacuzzi/hot tub and I spent the entire evening soaking my sore knees in the hot water while my spouse enjoyed having TV again.

So, that was the week of July 15th.

We then traveled to Chicago to celebrate my July 23^rd birthday in style with dinner at the Firehouse,

On the 25^th, Thursday, having bought a ticket to Texas so that I could be seen for elevated liver enzymes sooner than November 22^nd, I arrived 2 days after my birthday, and awaited pick-up by son Scott and the twins.

This is where things begin to go downhill, as I attempted to get a luggage cart and pilot error caused the thumb nail on my right hand to be ripped off by a machine in charge of renting the luggage carts.

I know. You’re saying, “How did THAT happen!?”

How, indeed.

That will be a story for another entry.

Suffice it to say that it has given me a newfound appreciation for all those movies where the bad guys torture someone by ripping off their fingernails.

Since the fingernail-ripping “Welcome to Austin” arrival, I found myself locked in the Buda Urgent Care (with 3 other patients) when 2 doctors could not get the locked front door open (they closed at 8 p.m and it was 9 p.m.on Friday night, July 26th) by the time Dr. McIntosh wrapped my injured finger in tape and tried to send me (us) on my (our) way.

Then, while picking up 2 wedge salads at the Buda Main Street Pizzeria, I got stuck in one of their two primitive rest rooms for 40 minutes.

Although I kicked the door and screamed HELP! a lot, nobody could hear me over the music. When I called, all I got was a recording. It was truly not what I needed right about then.

More details on the avulsion incident to follow

“Plastic People” At SXSW Describes A Harrowing Future

By Connie Wilson

On March 12, 2024

In Education, Health/Medicine, Of Local (Quad Cities') Interest, Pop Culture, Reviews, Texas

Ziya Tong, one of the directors of Canada’s documentary “Plastic People.”

The Canadian documentary “Plastic People,” directed by Ben Addelman and Ziya Tong, had its World Premiere at SXSW on Saturday, March 9^th, 2024. It is an absolutely terrifying piece of detective work, investigating how our fixation on plastic came to be and what plastic is doing to us. The synopsis said: “Plastic People is a landmark feature documentary that chronicles humanity’s fraught relationship with plastic and one woman’s mission to expose shocking new revelations about the impact of microplastics on human health.”

Directors of the Canadian documentary are Ben Addelman and Ziya Tong. Producers: Vanessa Dylyn, Stephen Paniccia. Ben Addelman also wrote the screenplay.The film explores the origins of plastic (petroleum products) and suggests that, “Now we’re realizing that we made some big mistakes…We’re finding them wherever we look in the human body.”

Noting that 83% of tap water has plastic in it, the experts tell us, “We are slowly turning into plastic people.” Among other cheerily prophetic statements are these: “We are poisoning ourselves with our own hands. We are producing poisonous food.” And Christy Tyler, a PhD scientist says, “Every single person is exposed.”

BIG MONEY

Plastic People documentary at SXSW 2024.

“Plastic People” at SXSW 2024.

The income of makers of plastic is mind-boggling. With the efforts to curb the production of vehicles that use gas, the makers of plastic are looking at other ways to push up production and sales. One avenue was to support the single use of plastic, rather than recycling. Furthermore, says the film, the myth that some plastic can be recycled is pretty much that, since less than 10% of plastic, worldwide, gets recycled. (Forget the handy-dandy little recycle symbol.)

The film documents the following money made by big petroleum:

BASF – $65 billion

Exxon obil – $231 billion annual revenue

Dow Chemical – $48 billion

SABIC – $35 billion

Chevron Phillips – $3 billion

Plastic bottles used daily? 1.5 billion. Two million plastic bags are used every minute, amounting to 400 tons a year.

The film asks whether we want “to destroy the world to enrich a few?”

THE VERY BAD

“Plastic People” at SXSW.

The entire message of the film is depressing. It doesn’t get any better when we see Dr. Celticki performing a brain operation and noting the presence of plastic that has crossed the blood-brain barrier. “If it can go to the brain, it can go everywhere,” he says. His message, “We are living in a synthetic world made mostly of plastic.”

Transferring all of this to an unborn generation means risking losing that entire generation. The effects of all of these chemicals on our bodies may not become clear for decades. What kinds of chemicals are we talking about?

Dibutylphthalate, Bisphonol A, Diethylnexyl phthalate, Decabro modiphenyl ether, hexabromo cyctodecane, perfluoralkyl and polyfluoralkyl nonyl phenol. All of them bad, of course.

All of these chemicals in our modern-day world have led to major increases in breast cancer, prostate cancer, and thyroid cancer. It is well-known that chronic inflammation is a precursor to serious illnesses. Fracking is another example of a very bad idea, health-wise.

In Portland, Texas a local resident talks about how the nearby Gulf Coast Growth Ventures Exxon Mobil plant spews pollution (1.6 tons of ethylene) and burns so brightly that you can come outside and read a newspaper at night.

PREVIOUS FILMS ABOUT POLLUTION

“Plastic People” at SXSW.

Like the movie “Erin Brockovich,” Diane Wilson of San Antonio, who was defending the fishing industry, described taking on 10 chemical plants that were dumping 5 million gallons of toxic waste daily. (“Corporations do not have a conscience.”) She sued Formosa and won a $50 million-dollar settlement. Her fight reminded me of that waged against Teflon coating in frying pans by Mark Ruffalo’s character in the 2019 film “Dark Waters” or the 1998 John Travolta film “A Civil Action.”

RESOLUTIONS

“Plastic People” documentary at SXSW 2024.

At film’s end, a Rwanda effort to curb single-use plastics is lauded, but its spokesperson says, “We need big countries to ban the use of single use plastic items.” The watchword is RESTRAIN and REDUCE (but nobody’s doing it).

CONCLUSION

This is not a “happy” film, but it is a necessary one. The scripted line, “Only when the problem becomes too big do we ask the questions” struck home. That sentiment also applies to climate change. The weird weather anomalies that we are all experiencing now have come about because we have ignored a major problem for much too long.

One small bright spot was how the Philippines has done some clean-up of their extremely polluted shores. It followed right after the news that the big countries export their waste to the small countries, like the Philippines, something referred to as pollution colonialism. The prophetic word spoken to Dustin Hoffman in “The Graduate” (Plastics) has come back to haunt us Big Time. What we are now seeing is described as “the embodiment of capitalism.”

After watching “Plastic People” I felt like I needed a drink, but straws are out now.

VietJet Airlines Offers Unique Experience

By Connie Wilson

On October 26, 2023

In Health/Medicine, Humor and Weird Wilson-isms, Local, Of Local (Quad Cities') Interest, travel

According to the October 27th issue of “This Week” magazine:

“A giant albino rat and a foot-long otter triggered panic on a flight from Bangkok to Taipei when they escaped from a passenger’s carry-on bag and roamed the cabin. The rat bit one of the flight attendants on the VietJet flight as they tried to catch the animals. A search of the plane uncovered a box holding 28 live turtles, a snake, a marmot, two otters, and two other unidentified rodents.”

An albino rat was found on a VietJet airline flight from Bangkok to Taipei.

And a partridge in a pear tree?

“Caterpillar” Documentary to Screen at Nashville Film Festival

By Connie Wilson

On September 24, 2023

In Health/Medicine, Movies, Pop Culture, Reviews, travel

This was a fascinating documentary about a new YouTube fad, changing one’s eye color, which is done, surgically, in India. It sounded very dicey, and, as it turns out, it is.

The documentary, written and directed by Liza Mandelup of the Parts & Labor film enterprise, followed the journey of Raymond David Taylor of Miami as he set off for India to have his brown eyes turned into a color described as “frost.”

It seems that there is a thriving cosmetic industry in Cairo, Mexico, Panama, and India and, of course, the recent deaths of two American citizens in Matamoros, Mexico, (we now know), was a trip for cosmetic surgery. A friend of mine flew to Costa Rica for dental work, so I’m surprised I had not heard of this latest vision fad, but I don’t spend much time watching videos on YouTube.

David had a very rough childhood, even getting kicked out of the house while young, at one point, and he (and most of the other patients) seem to think that “Changing me will change my outlook on life.” As David says, “If I feel sad one more day, I don’t know if I’m going to make it.”

“Caterpillar” to screen at Nashville Film Festival. (Raymond David Taylor).

He doesn’t have the money for the surgery, but a well-written letter to BrightOcular explaining his desire for the implants brings an offer from them to come have the cosmetic procedure for free, if he will let the company use his story and his photos for advertising purposes.

We then meet others on this medically unregulated journey, including Izzy, a woman from New Delhi, a young man from Japan, a male underwear model and a beautiful girl from Jamaica, but the focus is on David, which filmmaker/writer Mandelop explained was her attempt to initially start out with three main characters and trace their journeys, with one emerging as central to the story.

She described this engrossing film journey into eye surgery this way: “I wanted to visually convey it. I wanted to do something that people wouldn’t think was cinematic, like eye surgery, but make it cinematic. It became an emotional journey. David allowed me to make the film that I was craving.”

In the course of the journey, we meet David’s mother, who also suffered a rough, abusive life, but tried her best as a young single mother to care for her children on wages of $2.35 an hour. David’s mother and David don’t agree on a lot of things. She is okay with David’s being gay, but she says, “I cannot deal with that if you start cutting parts of your body off and adding stuff.” She adds that she thought he was a great female impersonator. Mom’s point-of-view is, “You’re stubborn. You don’t listen.” She adds, “You’re never satisfied with the way you look.” Others in the film describe the cosmetic procedure as “a bandaid to the past.” Most of the others have selected jade green as the color their brown eyes

It is a big blow to David when they do three patients’ surgeries simultaneously and, in the process, he is given jade green eye color by mistake, rather than frost. This will mean another eye surgery to fix the error.

All of the prospective patients seem to want to transform to some ideal person they have created in their heads. When the subject of the film appeared before us in person, however, the audience got the feeling that the subject of “Caterpillar” has, in fact, bettered his life, moving back to Brooklyn and now working as an EMT. He explained his mother’s absence from the showing as his way of “avoiding drama.”

Director Liza Mandelup and David Raymond, subject of the SXSW documentary “Caterpillar”on Opening Night, March 10, 2023.

On the left, Director Liza Mandelup and Raymond David Taylor, subject of the SXSW documentary “Caterpillar”on SXSW Opening Night, March 10, 2023.

Some other patients, we learn, who did not heed the United States opthalmalogists’ warning about the damage the implants have done (or are doing) to their eyes ended up blind or partially blind. One former patient whom David tracks down after he begins encountering headaches and blurry vision said that he woke up after 5 years with blood on his cornea. “I had to remove them or go blind.”

The unfettered access to the surgery and the patients seems quite unusual. That is, until we learn that the leadership of BrightOcular is very circumspect. No one ever comes forward to represent BrightOcular or another entity called Spectra. These agencies exist and are offering this service and heavily advertising how it will “change your life” on social media, with beautiful pictures of patients like David. They are not as forthcoming about the negatives of the procedure. The Indian physician who says he, personally, would not undergo the procedure knows this is a very risky way to change one’s outlook on life and seems to convey that through his reticence to heartily endorse the procedure.

David bought into it with words like, “This is my new beginning. I’m changing,” or “Beauty matters. Beauty gets you through the door.

Musical selections like “Stand By Me” and “I Want to Dance With Somebody,” selected by Music Supervisor Melissa Chapman, merge with the early upbeat theme of positive change seamlessly and add much to the extremely well-done production.

Afterwards, the writer/director (Liza Mandelup) and David, the chief subject, answered questions about the inspiration for the film and its aftermath. Liza said she had been doing research on the apps that can change one’s appearance when she learned of this eye surgery. She sent the BrightOcular company an e-mail asking I f she could do a documentary about the process. They were very positive in their response and never really surfaced as an entity. Their leadership remains a mystery.

Writer-Director Liza Mandelup.

She cautions that David was one of the few patients who listened to the warnings from U.S. eye doctors, post-surgery, and had his implants removed fairly quickly. Others have faced the need to have cornea transplants and some have gone blind because they refused to give up the implants over a period of years. One patient, asked what she would be content with in regards to improving her appearance, answered, “What am I content with? Just more.”

Among the best compliments of the terrific job the filmmaker did with this riveting documentary was a woman who stood up in the back during the Q&A and said, in heavily accented English, “You mean this was a documentary? I thought it was a movie!”

Republicans Died of Covid More Than Democrats, Say New Statistical Studies

By Connie Wilson

On July 31, 2023

In Health/Medicine, Local, News, Politics, Pop Culture, Science and Medicine

Governor of Florida Ron DeSantis opposed Covid vaccinations, as a Conservative Republican and even, in one well-publicized bit of video, urged schoolchildren wearing masks to take them off.

Now, the statistics are out and they show that, in the wake of DeSantis reopening all bars and restaurants and schools, the Delta wave in July 2021 killed Florida residents at a much higher rate then it killed residents of other states. Florida has only 7% of the United States population, but accounted for 14% of the U.S. deaths.

Most of the 23,000 Floridians who died during those months were unvaccinated or did not complete a two-dose regimen. Nine thousand of those who died were younger than 65.

The facts above were reported in the August 4, 2023 “This Week” magazine.

On “Meet the Press” with Chuck Todd this past Sunday, July 30^th, the Data Download portion of the program was about whether more people died in states that supported Trump or in states that supported Biden. The facts for “Meet the Press” were gathered both before the Covid vaccination was available and after it was available. The statistics mainly focused on Arizona, Georgia, Wisconsin, Florida and Ohio.

The statistics were gathered by a national group that has set about toting up the truth about whether or not being vaccinated was a “good” idea or a “bad” idea. We’ve all heard of the rare cardiac inflammation of some young men; the GOP really played those anomalies up, when they occurred (as they are likely to occur with any new drug). I have one staunchly Republican friend who is convinced that increases in breast cancer cases can all be laid at the feet of Covid vaccinations. (This is a stretch, Folks. And I would have a keen interest in such data.) We could perhaps all vote for RFK, Jr., who is convinced of many such vaccine conspiracies.

This week the journal JAMA Internal Medicine, published a study that supported a theory many had suspected: The pandemic didn’t hit all Americans the same — and Republicans, who lagged behind in accepting the Covid vaccine, paid a steeper price.

I scribbled furiously while old Chuck Todd was putting the figures up, so I simply wish to refer you to the link, itself, and let doubting GOP stalwarts read the JAMA (Journal of American Medicine) for yourselves. (If you don’t want to be vaccinated, yourselves, at least GET YOUR KIDS vaccinated. TYVM).

https://www.nbcnews.com/meet-the-press/data-download/uneven-toll-coronavirus-pandemic-rcna97107

Cubs Win Against Cardinals on July 21, 2023

By Connie Wilson

On July 22, 2023

In Health/Medicine, News, Of Local (Quad Cities') Interest, Science and Medicine, Sports, Texas

We are in Chicago and journeyed to Wrigley Field to watch the Cubs battle the St. Louis Cardinals today (July 21, 2023).

We took an Uber to the game ($40), which was probably in deference to the elder members of the group. (That would definitely be me and my spouse.) When we were going to return, the price was $60 so we took the ell, which turned out to be a free trip when the machine wouldn’t take my son’s credit card. The subway guru told all six of us to go on through.

The party included son Scott and wife Jessica and my twin granddaughters, Ava and Elise, age 14. Among other things, we’re celebrating my birthday on 7/23.

We were originally slated to have a seventh participant, but issues such as removal of a skin cancer and the delivery of plants derailed that idea.

Because we shopped for merchandise on the way into the park the bleachers were filling, but we successfully found a spot in the left field bleachers.

Mind you: I am not a big baseball fan.

When I returned from 3 months in Europe (People-to-People exchange student in 1967) my now husband—who had missed me, [as I had missed him], thought the first thing I would want to do upon my arrival in Chicago would be to attend a double header Cubs baseball game.

It was one of the longest days of my life.

The interesting thing, to me, was that everyone around me was speaking English. I had not experienced that in three months. I told my son not to get me a ticket for today’s game, but my daughter couldn’t join us; I hated to have him waste $80 x 2 for two unused tickets. We all suggested that he sell them, but they were on his phone, which seemed to be a hurdle. (How do you pass off a ticket that is on your phone to another person’s phone? Don’t ask me. I don’t know how to get them onto my phone in the first place.)

The weather was perfect—breezy, warm but not hot, just perfect. Plus, all of us had dressed for the occasion. The Cubs hit two home runs and took an early lead (4 to 1), but nearly blew it in the 8^th and 9^th innings. (And, yes, I made it through the entire 9 innings, and I want that on my record.)

The problem, for me, was that bleachers don’t have a “back” to lean against. I never had back problems until I took Anastrozole for 7 months, post cancer surgery. Or, at least, I didn’t know I had arthritis in my spine or whatever ailment it was that caused truly horrible back aches (and insomnia). The Anastrozole did a real number on my left knee and—out of the blue—my back would hurt so badly (right where you bend at the waist) that I searched through my left-over Oxycontin (root canal left-over) looking for some sort of pain reliever that worked. Unfortunately, you can’t take Oxycontin with a benzodiazepan, so no dice. Nothing ever did work. The other side effects included mood swings, dry skin, teariness, vision problems and vivid violent nightmares. So THAT was fun—(not).

Nothing helped. Ultimately, I had to discontinue taking Anastrozole or any other aromatase inhibitor. My left knee (injured in a biking accident in 1997 and in an Iowa City MOST knee study for 25 years) blew out on 9/15/2022. When I reported that to my Moline oncologist that the combination of old age and a previous knee injury, coupled with Anastrozole, had caused my left knee to quit working while I was simply walking along a Chicago street (“Cancer: the gift that keeps on taking.”) my Moline oncologist denied that there could be any connection between my back pain and/or my knee blowing out and said, in writing through the patient portal, “The only side effect from taking Anastrozole is a little stiffness in your hands, and it goes away when you quit taking it.” And if you believe that, I have a bridge for sale.

All my communication with the oncologist between February 8^th and August 8^th were through the patient portal and what I have come to call his “minions.” He never saw me himself in that 6 months, which has always seemed derelict. Yes, I was scheduled for appointments, but he was never there. The minions—at least 3 different ones—were interchangeably assigned.

I’m not sure the oncologist would have seen me on August 8^th if my surgeon had not called him up and said, “You need to see this patient.” . It is probably a good idea to see your cancer-stricken patient personally more than once every half year. And perhaps it would have been a good idea to have ordered an oncotype for me from the very beginning, since that determines the patient’s treatment path but also will provide some peace-of-mind regarding the possibility of a recurrence in the future. Why wasn’t it ordered? A different doctor in the system suggested, “He doesn’t like to be dinged by Medicare.” Which, if you are the patient, is not very reassuring.

My surgeon on August 7th suggested a Ki67 test, which would have determined the aggressiveness of the tumor and might perhaps given me some peace of mind. I asked the oncologist about it repeatedly through the patient portal. No dice.

And the oncotype, which my Texas oncologist said would have meant three bouts of chemotherapy for me had I been his patient, took 17 months to secure. The “minions” (all female… nurses, Physicians’ Assistants, etc.) were the only individuals who ever met with me from February 8^th until August 8^th and nobody seemed willing to order either an oncotype (considered Standard of Care since 2013) or a Ki-67. In fact, my Illinois oncologist—who had dodged me successfully for half a year—[while I had been asking about the Ki-67 test recommended by my surgeon for, literally, months through the patient portal]— said, “I won’t order that for you; you’ll have to get somebody else.”

So, I did. And I’d recommend to other future Unity Point (Moline, Illinois) patients that they remember that today’s mantra for medical care seems to be YOYO (“You’re On Your Own”). I certainly felt that way as I asked, time and time again, about ordering a Ki-67 and, time and time again, I was told by the minions, “That is a question you should take up with the doctor at your next appointment.”

Except that it didn’t seem very likely that I’d ever see the oncologist, in person, again.

And the minions did not listen well to anything you might share with them, such as the fact that I would not be in the Midwest for the April 6^th appointment they claimed I had made (when they called me in Texas to “remind” me of the non-appointment.) What about “I won’t be back in the Midwest until at least May is difficult to understand? And why did it take until May to do a bone scan, when I began taking Anastrozole in February? And why did Medicare deny the claim for that bone scan for literally months, when I had not had one since 2019? Someone should have taken a look at my weakening bones (osteopaenia verging on osteoporosis) before my previously injured left knee quit on September 15, 2023.

There is an entire study of medicine (AIMSS, since the sixties) devoted to aromatase inhibitor drugs and their effect on bones and muscles (especially if the joint has been damaged previously.) My oncologist—-finally learning of all of my side effects over half a year in— said, “Don’t take it then.” Then he walked out, leaving me to try to figure out what the next logical step should be for prevention of a recurrence of breast cancer (the purpose of Anastrozole.)

Since I was never ordered an oncotype when I began bringing it up (Dec.. 2021), and an oncotype is normally a guide to treatment as well as a guide to the probability of a recurrence, I had no idea how likely I was to have to go through another surgery. I likened my feelings of being totally and completely at sea to a small child standing at the edge of a frozen lake, wondering if the ice is thick enough to hold. An oncotype of my tumor might have yielded that kind of information, but I was simply told, “You don’t need one” and I tried very hard to be a good compliant patient for a very long (too long) time.

Was my tumor that small and insignificant? It was 11 mm. Why did I “not need one” when I only found one other woman (out of 60,000 on WebMD), who didn’t get one? Beats the heck out of me, but I will say that it took until March of 2023 (from my initial query at the very first appointment in December of 2021) to finally get an oncotype from a different doctor in a different state, who was not overly impressed with what I wrote down and presented to both the Texas doctor and the Iowa City doctor. (The Iowa City oncologist said, “Why do you think most of the Quad City patients come here?” Why, indeed.)

I asked for referrals to “good Quad City oncologists who listen to you” in Iowa City —citing remarks made to me (and others) like, “Last time I saw you, if you had had a gun, I think you would have shot me” and “After talking to you three girls (former employees of mine whose mother was a patient), I need therapy.” If those strike you as unprofessional remarks, no kidding.

To hear how Diana (my employees’ mother) begged her oncologist (also my oncologist) to run a test to see if her cancer had spread and to hear how he would not do it was upsetting. Her breast cancer, which had recurred after many years, spread to her pancreas and killed her. But when her daughters attempted to take her to the Mayo Clinic her oncologist said, “I interned there. I know everything they know.” O……K……

After 17 months, a Texas oncologist finally secured the oncotype I inquired about in December of 2021, which my Moline oncologist simply dismissed, saying, “You don’t need one.” Not only that, the Texas oncologist spent 2 hours of his time meeting with me, after hours, when everyone had gone home. (He was working late after hours because there had been an ice storm and all of his week’s appointments had to be canceled and then re-scheduled.)

The Texas doctor vowed to get me the test I asked about, which normally would have been done in January of 2022 after the 1/27/2022 surgery. It showed that my % of recurrence, according to the oncotype, would be 18% if I took Tamoxifen and 36% if I did not take this drug . The score of 29 was not a good one; 25 was the cut-off for chemotherapy/ I flunked an ultra sound test on 1/25/2023 at my one-year anniversary, and had to have a diagnostic mammogram on Valentine’s Day, during which I learned for the very first time that there was calcification on the left side as well as the (bad) right side. I had never been told that previously about the left breast and the thought that flashed through my mind was that it had taken 3 years for the calcification on the right to become a tumor and I’m coming up on 3 years of calcification on the left soon.

I suffered through a stereotactic biopsy in 2018 at Trinity (with no warning that needles were the order of the day, but a letter reaching me 3 days after the 2018 test telling me that I should “consult with your physician about your next step.”) A bit late for that. I cannot recall ever being given a “heads up” about the left-side calcification until the 2/14/2023 diagnostic mammogram.

Therefore, I have agreed with my Texas oncologist that taking one of the drugs that are considered adjuvant therapy (mentioned below) is in my best interests. However, the prevailing opinion is that I am one of the women who absolutely cannot tolerate aromatase inhibitors. (Clinical trials are underway in St. Louis at Washington University to determine who can benefit from them and who might become suicidal if taking them, which has happened.)

I am between the proverbial rock and a hard place. Iowa City seems to think that, “If it recurs, you just come back and we do it all over again.” (actual quote). My Texas oncologist said, “I’m not worried about it coming back on the contralateral side. I’m worried about it going some place else.”

My Moline oncologist never suggested taking any other medication after my 7 months on Anastrozole. He got up and left the room when I tried to share the symptoms I had experienced, saying, “Don’t take it then.” I thought we would discuss alternatives, but that didn’t happen.

I had to be wheeled in a wheelchair to my first post-surgical mammogram on October 3rd, because of my knee blowing out in Chicago on September 15th. I spent 6 months hobbling with a cane or using a wheelchair before my knee recovered from the inflammation caused by Anastrozole. Injections at a knee joint pain clinic in Oak Park (32 ml of an anti-inflammatory; 6 ml of Durolane) helped (on 9/21/2022), and four sets of orthopaedic surgeons in 3 states have weighed in. Tramadol (50 mg) was prescribed for pain. The precise cause has never been pinned down because I didn’t have an MRI. I would put hard cold cash that the Anastrozole was one of the reasons my knee gave up the ghost. My Moline oncologist—who is on record as saying the ONLY side effect is “a little stiffness in your hands”—would disagree. If he physically showed up in front of the 60,000 WebMD women, they would probably stone him.

My Texas oncologist said that, had I been his patient at the outset, I would have had three bouts of chemotherapy. That ship has sailed. It had been nine months of cold turkey no drugs at all before I flunked the ultra sound and was told “get thee to an oncologist ASAP.” I wrote all of this down in detail and gave a copy to both of my current doctors. I heard the Texas doctor discussing it with a female breast specialist in the hall. They were appalled. (They didn’t know I could overhear their remarks because the door was ajar.)

Now I am taking a different drug (Tamoxifen). It’s been around since the sixties and can give you blood clots that cause heart attacks and strokes and endometrial cancer. Not fun prospects. And yet the other survivors on WebMD describe many, many horrible side effects for every single one of the drugs (either blockers or drugs designed to stomp out estrogen in your body) we are told to take. It is difficult to understand why this wealth of 60,000 survivors is not being more fully utilized to let doctors who seem to be in denial into the information loop about what really happens to many female survivors on these drugs.

I’m not sure if Tamoxifen is implicated in the back pain at the ball game, or if it is simply old age and arthritis, but the over two hour baseball game, (which I went to in order to use my daughter’s ticket), will probably be the last time I sit on bleachers at a Cubs game. I am so happy that my son and family came to Chicago to cheer me on on my birthday. I’m so I’m glad it was a Cubs win. I’m happy I made it through the day and I hope I was a good sport. (I tried).

Meanwhile, if you are a cancer patient in the Quad Cities, take note:: YOYO.

“Caterpillar” Is Fascinating Documentary on Opening Night of 2023 SXSW Film Festival

By Connie Wilson

On March 11, 2023

In Education, Health/Medicine, Movies, Pop Culture, Reviews, Science and Medicine

“Caterpillar” documentary at SXSW.

SXSW 2023 is back with a vengeance.

I have not received Red Carpet placement for Opening Night since 2017, so I executed Plan B, planning to take myself over to the Alamo Drafthouse on Lamar Boulevard to see “Confessions of a Good Samaritan.” This was a film about a woman who donated a kidney to a stranger. When I arrived, the film had begun, so I took myself to “Caterpillar,” instead.

This was a fascinating documentary about a new YouTube fad, changing one’s eye color, which is done, surgically, in India. It sounded very dicey, and, as it turns out, it is.

Writer/Director Liza Mandelup, “Caterpillar.”

If you are thinking, “This can’t be safe,” you’re right. It is only about four months post-surgery after David undergoes the procedure that he describes it as “the worst mistake of my life” when headaches and visual problems begin. All of the prospective patients seem to want to transform to some ideal person they have created in their heads. When the subject of the film appeared before us in person, however, the audience got the feeling that the subject of “Caterpillar” has, in fact, bettered his life, moving back to Brooklyn and now working as an EMT. He explained his mother’s absence from the showing as his way of “avoiding drama.”

Director Liza Mandelup and Raymond David Taylor, subject of the SXSW documentary “Caterpillar”on Opening Night, March 10, 2023.

David bought into it with words like, “This is my new beginning. I’m changing,” or “Beauty matters. Beauty gets you through the door.

Afterwards, the writer/director (Liza Mandelup) and David, the chief subject, answered questions about the inspiration for the film and its aftermath. Liza said she had been doing research on the apps that can change one’s appearance when she learned of this eye surgery. She sent the BrightOcular company an e-mail asking if she could do a documentary about the process. They were very positive in their response and never really surfaced as an entity. Their leadership remains a mystery.

“The Fire That Took Her” Screens at Austin Film Festival on October 29, 2022

By Connie Wilson

On October 31, 2022

In Health/Medicine, Movies, Reviews

Ohio mother-of-two Judy Malinowski was doused in gasoline and set on fire by her crazed ex-boyfriend, Michael Slager. Judy would go on to become the first person to testify at the trial for her own murder. “The Fire That Took Her” is a 94 minute documentary directed by Patricia Gillespie that examines the defects that exist in protecting abused women like Judy from their abusers.

As Gillespie told “Screen Rant” in an October 20^th interview the day before the film began screening in theaters, “The police, try as they might, didn’t have the systems in place to protect her or the laws in place to prosecute repeat domestic violence offenders like Michael Slager. You can clearly see in his records that he was ramping up to commit a crime like this, and he was pretty much uninterrupted.”

Gillespie, with the assistance of cinematographers Tom Hurwitz, Martina Radwan and Lisa Rinzlerloin and the astute editing of Emiliano Battista, goes inside the landmark case with extensive interviews with Malinowski’s family, including her mother, Bonnie Bowes, her children (daughters Maddie and Kaylyn), her siblings, and the police and justice systems involved in bringing Judy’s murderer to trial.

Judy Malinowski in “The Fire That Took Her.”

Danielle Gorman, Judy’s sister, upon seeing her in the hospital immediately after the assault, burned over 95% of her body, went into the hallway of Wexner Medical Center at Ohio State University and vomited. As the film says, “Nothing could possibly prepare you for the condition she was in.”

Judy had begun dating Slager after they met on the Internet. His many tattoos caused mother Bonnie to urge her rebellious daughter not to let her children near Slager. But Judy, over the years, which began with having two children in her twenties and continuing through a drug dependency brought on by surgery for ovarian cancer, had become addicted to pain pills and was in a downward spiral. Still, meeting Michael Slager was the beginning of the end. Said her mother, “Everything went downhill when Michael Slager came into her life.”

Slager, it turns out, was the kind of man who made a practice of preying on women with addictions. He would then become their “supplier” and be able to manipulate them in any way he wished, including physical abuse. Slager had something like 38 convictions for everything from receiving stolen property to domestic abuse to burglary to rape (plea-bargained down) and even attempted to manipulate Judy’s mother, leading her to believe that money she would give him to “take care of” Judy was being used for that purpose, when he actually was securing drugs for her with the cash, moving on to heroin.

The couple began dating in April of 2015 and Slager moved in with Malinowski and refused to leave. Near the end, Judy is trying everything she can think of to rid herself of the toxic relationship, including telling the police that Michael had threatened to kill her if she left him. Nothing was done, because he would paint her as a drug-addicted liar.

Finally, Judy decided to enter Parkside Rehabilitation Center on Sunday, August 2, 2015. Michael offered to drive her to the rehab center, where she hoped to escape from him once and for all. On the way there, he pulled his truck into a gas station near the Heartland Bank. They argued and Judy threw a cup of pop on Slager. Retaliating, he went to his truck, took a full gas can from it, and poured gasoline over her body, from the head down. He then went to his truck but returned to the woman in 32 seconds, now on the ground. Witnesses said it looked as though he intended to punch her. Instead, he used a green plastic lighter to set fire to his ex-girlfriend, who said, “I just remember crying and begging for help. His eyes turned black.”

Later, Slager—who refused to admit that his actions were intentional—would say that Judy had asked him for a cigarette and he had no idea that lighting it would set her on fire, although Judy’s testimony was that Slager said, “How do you like this, bitch?” among other taunts. Judy’s remembered some of the gasoline going down her throat, burning her internally, which would put the lie to his story, even if cameras at the nearby Heartland Bank had not captured the entire incident on film.

Said Chad Cohagen, the lead detective who is filmed asking Slager about his actions, “I had never seen trauma like that to a human body that wasn’t deceased.” When Judy reached the hospital she was “clearly processing” her ordeal and detectives tried to get a statement right away, in case she should die immediately, which most thought would be the case. Judy, when asked about the attack said, “I don’t think I can express what it feels like to have your whole body set on fire. It was beyond excruciating.”

It should be noted that Michael Slager reached out to the film’s director, Patricia Gillespie, and wanted to be interviewed, but each time she showed up at the prison to interview him, he had committed some new offense that made him unavailable. The best summation of Michael Slager came from Judge Julia M. Lynch, when Slager agreed to plead “no contest” rather than risk having a jury trial. Judge Lynch said, “You’re one of those people who has no soul. You need to be incarcerated. Take him out.”

Unfortunately, under Ohio law, the maximum sentence she could give Slager for his attempted murder of Judy Malinowski was 11 years. Recognizing the gross injustice of this light a sentence for such a heinous crime, Franklin County Attorney General Ron O’Brien and Warren Edwards, Franklin County Prosecutor, set about to try to make it possible for Judy to testify in Slager’s trial from beyond the grave, via videotaped statements made from the hospital bed she occupied for nearly 2 years before dying.

The Ohio House Bill 63, known as Judy’s Law, passed the Ohio house and moved on to the Senate, where it passed, making penalties for such acts much more severe and acknowledging harsher sentences for those who intentionally attempt to mutilate or disfigure their victims in the course of an attack. Judy also testified that, in her opinion, a just punishment for her former boyfriend would be life in prison without the ability to be paroled, as she did not believe in the death penalty. The film ends by saying that they hope Judy’s Law will become national law in 2022; I have heard no talk of that happening and the year will be over in 2 months.

Judy Malinowski courageously began weaning herself off pain medication in order to be allowed to testify. The question was not only about whether she would be coherent and lucid, but also was an attempt to keep from embarrassing both the victim and the prosecutor’s office. When she did get the green light to testify on her own behalf for the first time in a court of law, a precedent-setting opinion that will affect future trials, Judy went without many pain pills to keep her comments coherent and testified for 3 full hours. Her assailant demanded the right to be present in the room and to cross examine the woman he tried to kill; that motion was denied. One thinks about victims like O.J. Simpson’s wife Nicole and wonders if she had left more than just photos of the abuse she suffered at O.J.’s hands, would the verdict have been different?

Judy spent nearly 2 years in the hospital, undergoing over 50 surgeries and coding 7 times. Her nurse, Stacy Best, testified to her courage and spirit in working towards the goal of testifying in her own murder trial. As one prosecutor said, “It’s the first time I ever had a conversation with a homicide victim.” Her mother said, “It’s terrifying to feel this way. There’s nothing that’s okay about this. I want him to be sorry because she’s a human being.”

Judy’s Down’s syndrome younger brother is shown reciting some of the lyrics to the Beatles song “Let It Be” and the family is shown accepting the verdict of life without parole, because that was what Judy wanted, and, more importantly, in the words of the chief investigator, “I wanted Judy’s voice to be heard as quickly as possible.”

After years of trying to get help against pure evil, Judy emerges as a courageous voice for all abused women, a force for change. Human interest stories in the Columbus Dispatch and other papers followed the case and even defense attorney Bob Krapence admitted that what his client had done was inexcusable.

As Judy’s mother says more than once in the film, we don’t want to accept that anyone could willfully do that to another human being. Yet it is clear that this horror completely destroyed Judy Malinowski’s life and that of her family and loved ones.

The documentary is 94 minutes long, but it is well-paced, a tribute to the editor. The MTV documentary certainly makes its point, aided by Katy Jarzebowski’s music and the testimony of all involved (with the notable exception of the convicted murderer.)

One particularly effective stroke—beyond the actual footage of the attack—is the use of frames of film that appear to be burning up. “The Fire That Took Her” was shown at the Austin Film Festival on October 29, 2022, and will be screening on Paramount Plus in late November. Don’t miss it. The truth is not always pretty, but, as Chief Investigator Chad Cohagen said, “We are about the truth.” This documentary was truly disturbing. To quote Cohagen of the attack on videotape, “That scene has played out in dreams more times than I can count.”

“No Ordinary Campaign” World Premiere at Chicago International Film Festival Chronicles Efforts to Cure ALS

By Connie Wilson

On October 17, 2022

In Health/Medicine, Movies, Politics, Reviews

“No Ordinary Campaign” at Chicago International Film Festival Chronicles ALS Research

The documentary “No Ordinary Campaign,” directed by Michael Burke, focuses on the fight for more funding and help for patients suffering from ALS. The focal point of this fight for life is ALS sufferer Brian Wallach and his wife. Brian, a former Assistant District Attorney, met his wife. Sandra Abrevaya while working on Obama’s 2008 presidential campaign.

In this fight however, after his diagnosis at only 37, the stakes are literally life and death—for Brian and for all other sufferers of diseases like ALS. Alzheimer’s and Parkinson’s disease. With their background in politics and their friends in high places (Obama speaks in the documentary and the Mark Zuckerberg/Priscilla Chan Initiative underwrote) the couple spearheads efforts to increase awareness and funding for ALS research.

The Wallachs lead the charge in personifying “courage in impossible situations.” They use their organizational skills to unite patients and their families, nationwide, and work to raise funds, testifying before Congress for increased funding to find a cure for these neurological diseases because “hope alone does not get you a cure.” Founding iamalsorg.com is a first step to unifying the many disparate voices crying for help.

One of the impediments to care turns out to be the FDA itself, which had a 6 month wait time to apply for social security disability benefits, when the life expectancy of many ALS patients is, basically, that short. It made no sense, nor did the clinical trial of a promising new drug (AMX0035) that let patients take it, but only for a short time. Patients who were experiencing progress were cut off after the clinical trial period, for no discernible good reason.

Brian and Sandra are shown making an emotional appeal to Congress in which they said, “Do not let another generation of patients die in pursuit of the perfect. Instead, let them be the first generation to live.”

The efforts of the consortium including legislative help from Senators Dick Durbin and Lisa Murkowski, leads to success in the Accelerated Access to ALS bill being signed by President Biden in June (2022) and approval for the use of AMX0035. The group also raised $80 million in funding in 2 years, much more than had ever previously been devoted to research for a cure.

With patients (1 in 300 will get ALS) pleading for help before the Congressional committee, Representative Rosa DeLaura of Rhode Island said, “I promise you we will fight for your survival. Godspeed.”

This was the World Premiere of the documentary from Redtail Media. Katie Couric was one of the executive producers.