Welcome to WeeklyWilson.com, where author/film critic Connie (Corcoran) Wilson avoids totally losing her marbles in semi-retirement by writing about film (see the Chicago Film Festival reviews and SXSW), politics and books----her own books and those of other people. You'll also find her diverging frequently to share humorous (or not-so-humorous) anecdotes and concerns. Try it! You'll like it!
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.
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.”
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 will be after surgery.
Writer/Director Liza Mandelup, “Caterpillar.”
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.
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.
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 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.
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!”
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 20th 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. “TheFire 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” 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.
I had my final radiation session (of 33) today at Trinity Hospital (Unity Point). It is July 18, 2022, and my birthday is in 5 days.
The staff has you ring a bell (which I had never noticed before today) and I was given a small stone engraved with Courage, Love, Strength and a card with what looked to be about 30 names.
I have been driving down to Trinity at a quarter to 1 p.m. every week day since May, with a hiatus after session 19 when we went to Texas for our Family Fest (family reunion).
During the sessions, I have gotten to know Brie, Lora, Alysson, Susan and some of the other technicians and they have performed admirably. Alyssa will graduate this coming Thursday from her online university program in radiology.
I wanted to take something to the girls, and, of course, food was the first thing one thinks of, but I, for one, do NOT need another doughnut and I think perhaps some of the technicians don’t, either, o I tried to think of something tied to my recent Texas trip.
The bags that were given each of us who came to the reunion were so colorful and nice that I asked my daughter-in-law for 4 of them. Then I had to think of what to put IN the bags.
After some soul-searching (tee shirts? Key ring?) I realized that I had an entire basement full of books…books that I wrote over the years since 2003 and on many different topics. In addition, since I have at least 2 series with 3 books in them (novels and short story collections), they could mix and match and share with one another, selecting the ones they felt they would enjoy most. If none of them suits their fancy, they can donate them to a local library, but these are books that I painstakingly wrote, myself, so there is a personal element in giving them something I “made.”
I read (on WebMD) about other gifts from other patients, but almost all were food. I do admit that food is tempting, but that will be my next big hurdle: shaping up and not eating bad foods, so I went with books. I do wish I had been “dressed” in my street clothes when asked to “ring the bell” but I had just climbed down from a radiation table and, as you can see, had on a beautiful hospital gown of nondescript style.
I had a meeting with my radiologist, Dr. Stouffel, who felt I had done well. I will see him again on Aug. 11th.
It sounds like, from this point on, I merely take the Anastrozole pills I have been on since February and then I have a follow-up mammogram no less than 6 months after the end of radiation. That will be January and I will be in Texas. When I asked whether I should find a mammogram place there or wait until I returned to this area, the doctor said I needed to do it here so that the previous monograms taken could be compared. That will be more like 10 months before the next mammogram will take place.
I asked if this was in any way risky and he said it would not be.
So, from now on, while awaiting my August colonoscopy, my dental exam, and my vision screening, I am done (I hope).
I hope for a return to normalcy and an end to the 70 doctor visits I’ve experienced in 8 months’ time
I’ve been saving these Charles Schulz “Charlie Brown” Words of Wisdom for a slow news day, one where no insurrections have occurred and no hearings air on television concerning Donald J. Trump’s attempts to overthrow the United States government. But you know The Donald; it’s hard to keep his name out of the news. I’m not writing an entire piece about Wife Number One, but news is news.
Ivana Trump in 2007
Today, the news is that Ivana Trump, mother of Ivanka, Eric and Donald, Jr., fell downstairs in her New York City townhouse and died. She missed her hair appointment. (She was planning on jetting off to St. Tropez or another exotic port of call). A wellness check found her at the bottom of the staircase, unresponsive. [I wish I hadn’t just watched “The Staircase” because that is all I could think of when I heard thenews]. Ivana was only 73 and had been a word class athlete—skiier, I think— in her prime. She was also instrumental in helping run some of The Donald’s hotels during his New York City run.
To the best of my knowledge, no other famous actors or actresses shuffled off this mortal coil today, so today is as good a time as any to share the winsome wisdom of one of our favorite cartoon characters, as voiced by Charlie Brown.
Therefore, here are CHARLIE BROWN WORDS OF WISDOM:
Happiness is anyone and anything at all that’s loved by you.
In the book of life, the answers aren’t in the back.
Sometimes I lie awake at night and ask, “Where have I gone wrong?” Then a voice says to me, “This is going to take more than one night.”
Love is being able to spot her clear across the playground among four hundred other kids.
A dog doesn’t try to give advice, or judge you; they just love you for who you are. It’s nice to have someone who will just sit and listen to you.
Grownups are the ones who puzzle me at Christmastime… Who, but a grownup, would ruin a beautiful holiday season for himself by suddenly attempting to correspond with four hundred people he doesn’t see all year?
If it goes without saying, why did you say it?
Dear Pencil-pal, did you have a nice summer? Mine could have been better, but it could have been worse. For me, that’s good.
I’m going to give up everything, and devote my life to making my dog happy!
Ah, there’s the bell! One more lunch hour out of the way. Two thousand, one hundred and twenty to go!
Real love is standing behind a tree so you can see her when she leaves her house. Of course it can sometimes be embarrassing. Like when you discover you’ve been standing on the wrong side of the tree.
Nothing takes the taste out of peanut butter like unrequited love.
Whenever I feel really alone, I just sit and stare into the night sky. I’ve always thought that one of those stars was my star, and at moments like this, I know that my star will always be there for me. Like a comfortable voice saying, “Don’t give up, kid.”
There must be millions of people all over the world who never get any love letters. I could be their leader.
I don’t care what Lucy says. I may have had troubles in the past, flying a kite. I may have never won a baseball game. But, it’s not for the lack of trying!
Lots of things have happened to me, and I’m glad I did what I did. You know, I was never sure how I’d be able to stand up under pressure and how I’d make decisions, and I feel good about myself for the first time in my life!
When I received the July 8/July 15th issue (p. 14) of “The Week” magazine, I was most struck by the article on page 14 that relayed how the recent Roe v. Wade reversal is viewed by the rest of the world. There’s no question that a woman’s decision to have a child–whether intentional or unintentional—is probably the biggest economic decision that female will ever face.
It’s pretty powerful. Here it is:
How They See Us: U.S. Rolls Back Women’s Human Rights
By reversing Roe v. Wade, the U.S. Supreme Court’s radical conservative majority has delivered “a profound and ominous setback” for women’s rights”—and for democracy, said The Irish Times in an editorial. Even though more than 60% of Americans believe abortion should be legal “in all or most circumstances,” the court’s life-tenure far-right justices have now cleared the way for abortion bans to take effect in about half of the 50 states.
The U.S. thus joins Catholic El Salvador, Nicaragua, and Poland as the only countries to roll back abortion rights in decades. Some European countries, it’s true, restrict abortion at 12 or 16 weeks, earlier than Roe, but we also have largely free health care, so in practice, European women have easy access to abortion. Here in Ireland, the procedure was legalized by a referendum in 2018, spurred by the 2012 death of Savita Halappanavar, who was denied the abortion that would have saved her life as she miscarried an unviable, wanted pregnancy. Halappanavar died in an Irish hospital as her husband begged doctors to help her. The U.S. has doomed itself to a future of similar tragedies.
For any European who has ever been pregnant, said Rhiannon Lucy Cosslett in The Guardian (U.K.), the news from America “felt visceral, as vicious misogyny often does.” Pregnancy is a wholesale takeover of the body. I wanted my child, but having been through it, I know that forced birth would “amount to torture.” American women and girls, henceforth, will suffer, and at the explicit direction of the state. But not all of them, said Marius Oprea in Mediafax (Romania). Most rich women will still get the care they need, even if they have to travel out of state. But poor—especially Black, women—will either have unwanted children or try to self-abort. The U.S. health care system “is utterly unprepared” for the wave of abandoned newborns and mothers in crisis. Expect a health crisis of “apocalyptic proportions.”
The ruling is further evidence of America’s “democratic collapse,” said Le Monde (France). The extremist Catholic majority on the court is the product of “the tyranny of a minority permitted by an electoral system outrageously favorable to the most conservative states.” Donald Trump was defeated in the popular vote, yet became president anyway. He then nominated 3 ultraconservative justices who were confirmed by a Senate whose makeup is permanently skewed to favor rural voters at the expense of the Democratic majority.
President Biden often talks of a world at war “between democracies and autocracies,” said Mariam Martinez-Bascuan in “El Pais” (Spain), “but we can no longer be sure the U.S. is in the former camp.”The repeal of Roe is just the latest example of Republican “obstinacy,” from the Jan. 6th assault on the Capitol to the “dying rage over firearms” and efforts to restrict the Black vote. And like the other examples, the abortion ruling will surely hurt America’s standing in the world. How can the U.S. pose as the beacon of freedom against the authoritarian darkness of Russia or China, when it denies its own female citizens their basic human rights?”
I’m going to be “in transit” today (and probably tomorrow) but here are some Gratitude Quotes to entertain, They say that writing down 3 things you are grateful for nightly can “re-set” your expectations. Here are some starters from some famous folk:
Gratitude is not only the greatest of virtues, but the parent of all the others. — Cicero
Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow. — Melody Beattie, author
Let gratitude be the pillow upon which you kneel to say your nightly prayer. — Maya Angelou
Acknowledging the good that you already have in your life is the foundation for all abundance. — Eckhart Tolle
Nine-tenths of wisdom is appreciation. Go find somebody’s hand and squeeze it, while there’s time. — Dale Dauten, business coach
Your bounty is beyond my speaking. But though my mouth be dumb, my heart shall thank you. — Nicholas Rowe, writer
Joy is the simplest form of gratitude. — Karl Barth, theologian
O Lord that lends me life, lend me a heart replete with thankfulness! — William Shakespeare
When I started counting my blessings, my whole life turned around. — Willie Nelson
I know for sure that appreciating whatever shows up for you in life changes your personal vibration. You radiate and generate more goodness for yourself when you’re aware of all you have and not focusing on your have-nots. — Oprah Winfrey
I am grateful for what I am and have. My thanksgiving is perpetual. — Henry David Thoreau
This will not be my last Monday of radiation, but it may be the last full week of same.
There was a very interesting article that I ran across about Clinical trials for a new method of dealing with breast cancers, which involves freezing the tumors, which then implode. It sounds ideal, as there is no incision, no radiation, and all the prospective patient has to do thereafter is take one of the aromatase inhibitors. They have found that the “implosion” of the tumors actually seems to stimulate the patient’s own immune system to deal with whatever residue is left after the deep freezing. Wish I could have been in that M.D. Anderson study, but that would have required me to live near Dallas, Texas. I did want to mention this for the benefit of the 1 in 8 women who might be diagnosed with breast cancer and fall into the category I fell into, which means late-in-life presentation and small and no metastasis.
It sounds like this method could revolutionize the treatment of breast cancer (and, possibly, other cancers. The idea of having NO scar and NO operation is tempting, and the fact that one does not have to undergo radiation afterwards is equally tempting.
Yesterday was Father’s Day. The pictures I will post here are of the restaurant I took my husband to for dinner. I have to admit that I was planning on cooking a pork loin roast with a new recipe for the seasoning but I apparently had a senior moment and froze the sucker. It was as hard as a rock when I realized my faux pas.
The Captain’s Table
We dined, instead at the Captain’s Table just below the hill that we live on and roughly 2 miles away. It was beastly hot, but the outdoor veranda was lovely and my husband enjoyed a shrimp tempura dinner while I had the salmon with a brown sugar/mustard sauce.
He also received a Super Box from the children, which will allow us to get viewing on our Texas set, as we have one here. We are currently watching “The Offer” with Miles Teller, a 10-part mini series, that tells about the drama behind the making of “The Godfather” half a century ago. I will be reviewing it here after we watch episodes 9 and 10, which remain.
After that, we’ll move on to Dark Winds, which is recommended, about an investigator on an Indian reservation.
The father in house also got 3 lovely cards, a gigantic bottle of Seagram’s 7, andan Amazon gift card.
At the risk of becoming a “woe is me” blog, I am sharing today’s latest cancer concern.
I made it through my 16th day of radiation with no bad side effects, but a slight amount of redness. Some nurse assistant (whom I had never seen, although she seemed to know my name) handed me a green printed handout that said I should add 1/4 cup of vinegar to 2 quarts of water and then soak a cloth in this and put it on my slightly red upper right quadrant. I am sorry that she handed me that really antiquated advice at that moment in time, because I was feeling fine until then and the redness was quite slight.
I thought when she told me this that it sounded like advice from the 1920’s. Why do I say that? My mother had a favorite story about her bad sunburn when she was 20 in 1927. She was supposed to be in a girlfriend’s wedding as a bridesmaid and they had to sew her into her dress. After that, she described exactly this therapy for her bad sunburn: vinegar in water. Surely there is something more up-to-date and modern in 2022, nearly 100 years later?
So, my husband and I (who had been actually out CELEBRATING how well I had been doing, dining at the TreeHouse in Davenport) secured a vat of vinegar roughly the size of my head (K & K Hardware) and carefully measured out this concoction and I spent most of the evening of 6/3 applying carefully wrung out cloths to my right breast.
This turned out to be a very bad idea.
In the night, I woke up in pain and realized that the skin under my right breast had totally sloughed off. This, despite having NO problems up to the point of the vinegar soaking. The difficulty is keeping the area under a 44D breast dry to heal, which I well know, so I was actually sleeping with a wash cloth tucked in strategically, but it didn’t help.
I now am very, very red and in a fair amount of distress and some pain, but I showed up for my radiation on time and, when I did, ran into Daniel, the male nurse, who asked how I was doing.
Me: “Not that great, Daniel. All of the skin under my right breast has left the building and it hurts like a son-of-a-bitch.” (At the time, I was waiting to be shepherded back to the radiation table, where I have spent the past 16 week days. This day would mark the halfway point of my 33 day ordeal. I was in “the pond,” pictured below.)
Daniel spirited me away to an examining room and secured a radiologist (not my normal one), who nixed radiation for the day and prescribed the ointment I had asked for much earlier in the festivities. (I wanted to have it on hand when/if things got bad). With a name like Silvathiazole, it immediately conjured up memories of the sulfathiazole ointment my parents always applied to injuries during all my growing up years.
Now I am applying this white salve (a prescription with sulfa in it) for 3 days (Friday/Saturday/Sunday), putting it on four times a day, [but not 3 hours before radiation]. I am scheduled to meet with my oncologist at 2 p.m. on Monday, and I have been told to show up a half hour early on Monday, to make sure that it is okay to radiate at all on Monday.
Known as “The Pond,” one waits for pick-up to the radiation room here.
The problem with all this is that I have a very narrow window of opportunity to get all this done before boarding a plane for Texas on June 30 to fly to Austin for the Family Fest. I was supposed to have been “done” on June 27. That has now become June 28th. Then, of course, we have to drive to Chicago, which will probably occur on the 28th or 29th—unless this doesn’t heal up. And we fly on the 30th.
Do I really expect this to heal up? It is impossible to keep this area dry. I learned this the hard way when all of my stitches from my low faneuil incision tore out after my second C-section in 1987. That was an emergency room visit with my then-19-year-old son doing the honors, as his father was busy being plant manager at a Deere plant.
So, whoever made the 1920-era suggestion of vinegar in water for ME, in particular: VERY BAD IDEA. I realize that the cumulative effect of the radiation is just now evidencing itself, but someone should have given some thought to the concept of trying to keep the midriff and under-the-breast area of someone with 44D breasts DRY during this sensitive period. Now, I’m paying the price and the jury is out on whether I will make it through 33 days of this or not by June 30th, when I leave.
Keep in mind that no less an authority than Iowa City, Iowa, told me that they would not have radiated me at all had I had surgery there. While I felt that some of that was ageism, some of that was sexism, and some of that was probably just the insurance company not wanting to pay for anything they could avoid, I am still in agreement that helping reduce the risk of recurrence was worth trying to go through radiation. Not sure if cutting off “the boost” part of the process (i.e., the last 5 days of the 33, when they aim the beams directly at the hole left by the incision, rather than simply radiating the entire upper right half of your body, as it seems we are now doing) will be enough. Not very happy that I was handed the green sheet with the 1920-era advice on it, which I blindly followed.
I remember asking how much of this 33 days would be necessary to do me any good after my May 6th Iowa City visit, on upping the odds of no recurrence and being told nothing very firm. It sounded, to me, as though the final 5 days might be omitted without that much loss of the % benefit, but what do I know?
This has really shot down our premature celebration of making it through the first half uneventfully. I can’t help but feel that the introduction of vinegar and water to treatment—which is about as old-fashioned as you can get—was a very bad idea. And I am crossing my fingers that this salve—which I asked for right out of the box for the time when this started to happen, which could have been predicted from the get-go given my uber-sensitive skin—works.
My best friend in Austin, Jennifer Berliner, died today (May 23, 2022). She was a heart transplant survivor and 44 years old. She and Adam, her husband, had just celebrated their twentieth wedding anniversary.We met playing euchre and hand-and-foot canasta and I encouraged her to start her blog, www.anewheartrocks.com. The post below is from Jenny’s blog and written some time ago. At one point, Jennifer wrote: “Honestly even if the end game is death, at some point that is okay too. Death is not a personal failure, it’s a biological ending. If I die, I won’t take it personally.”
Rest in peace, Jennifer. You fought the good fight. I will miss you, and so will the rest of your tribe.
“Maybe if I can shed light on how I endured a heart transplant, cancer and the death of my mother all at the same time, then maybe it could bring comfort to others facing their own adversity.
I’ve danced with death for so damn long that sometimes it’s work to remain optimistic, but I try. So many things are out of my control, and this infuriates me. In the face of these challenges, how do I instill hope in myself and others?
God, grant me the Serenity to accept the things I cannot change, the Courage to change the things I can, and the Wisdom to know the difference. ~The Serenity Prayer
I wish I could share some recipe with how I overcame my adversities, unfortunately my recipe is complicated and unique to only me, the chef. No one wants to hear that it takes time and persistence. People want a quick fix, a panacea, and I don’t blame them. When you’re in pain, you need it to end quickly. Maybe from my list you will walk away with one or two strategies that I know helped me to go from surviving to thriving.
How I Avoided Death in 10 steps:
My top 10 survival guide is listed in random order, except number 1, because it’s the most important and that is: Do not attempt this on your own. Humans need other humans. If we are left alone we will die. When you are faced with insurmountable adversity, you need one person who will walk with you on this bumpy road.
Admittedly that one person can get exhausted, so ideally you need several people to
support you and walk at different times. A support system or what I call “my Tribe” includes my family, friends, fellow congregants at my synagogue, and friends from my card clubs. (I love playing cards. I’m 43 years old, but I’m really an old lady on the inside).
There was a time I begged for death. For months on end, during my Chemo to treat bone cancer, I contemplated dying. I only survived that experience because of the love of my family and friends. Then when I was faced with a heart transplant, my family was still at my side, and now I also had a husband who became an amazing caregiver. Adam spent months in the hospital with me. He was exhausted and yet his commitment never wavered. My sister also helped me out significantly during this time when I lived in her home for two years. And my friends, were incredible.
After my first battle with chemo, I made a pledge to myself that I was going to have good friends by being a good friend. Twenty five years later, these same friends were at my side. Taking time away from their jobs and children to put on gloves and stay days and nights with me in the transplant hospital. Incredible.
I have many people I love, so I will endure any pain to remain on this planet to be with them; likewise, their love keeps me afloat. A good support system is vital to my existence and well being. If you don’t have a support system, a good place to start is to get yourself to a place of worship. The community will surround you and it will lift you up in ways you can’t imagine.
I’ve been in counseling on/off for most of my life. I need guided relaxation and hypnotherapy to get me through painful procedures. Then I need the talk therapy to get past the trauma.
I’ve also had to learn (and still relearn) coping skills to get me through the traumas I’ve experienced. We are not born with inherent knowledge of coping skills, they are all learned, so I go to counseling at different times in my life. I’ll keep this one short and sweet, you get the idea.
Ok, medication is really how I should title this section, but you get my point.
I don’t take anything that isn’t prescribed because I am a transplant recipient and even a herbal mouthwash can prevent my anti-rejection medication from working. With that said if I’m in pain or facing an uncomfortable procedure, I will not let a doctor or nurse shame me into thinking I’m not brave (I’ve already proven I’m crazy brave).
I am no longer willing to soberly submit myself to a drill in my back (bone marrow aspiration) or a 2 hour MRI (in a casket). My mind and body have their limits and if medication can help, then I’m taking it.
My Mum was always at my side cheerleading me on while she received more than her share of mistreatment and suffering. My Dad also spent countless nights at the hospital. The scales were terribly unfair towards both of them, but particularly towards my Mum because I lashed out at her the most. I was rotten and had terrible coping skills, but somehow she persisted too. I think like a cub I just followed my mama bear. The biggest gift my Mum gave me during this time was being with me, so that I wasn’t alone. This empowered me, fueled my grit and gave me the ability to keep the course. Misery loves company.
I also focused on the idea that there’s light at the end of the tunnel, that someday this Chemo will be over or that I will heal from my heart transplant. Honestly even if the end game is death, at some point that is okay too. Death is not a personal failure, it’s a biological ending. If I die, I won’t take it personally.
5, Goal Setting & Rewarding Myself:
My idea of setting goals happened organically. I was refusing Chemotherapy at age 15 and I bribed my parents for money over the course of many months to help me buy a car. I’m not proud of this manipulation, but we both got something we wanted out of the deal. They got a more compliant, less hostile patient who did her Chemo and I got to dream about my car and freedom. (My car was an old beater and I loved it).
Since then I’ve kept my eye on the apple. I have set many goals in my life and achieved every single one of them. It takes time, patience and mindfulness to set and achieve your goals. These steps can be slow with setbacks at times. However, the reward is sweet.
I’m still setting goals, most of which include traveling somewhere. On my bucket list after my heart transplant is going to Paris. This is a big one and I’m hoping to go next year. I’m planning now for it.
6, “It Could Be Worse” & “Not Sweating the Small Stuff”:
I’ll use bumper sticker mantras any day if will help.
Not sweating the small stuff is easier said than done. The more I’m faced with challenges, the more I have to let some things or even relationships go, so that I have the energy to battle with the life and death issues in my life. Some might say, that I have developed a fuck-it attitude or that I don’t care. This is actually not true, I care so much that I have to walk away sometimes or I will make myself physically sick from worry. I have to set boundaries sometimes, and these lines can be tough to draw.
“It Could Be Worse” is a mantra I’ve used many times to get me through painful procedures. Like an athlete before the big game, I have to use self-talk to get ready to do a procedure, like when I talked myself into staying strong right before going in the OR for my heart transplant. I was tearful at the idea that my unknown donor died leaving me such a profound gift. I was so grateful that I had a heart. I spent months exploring this issue in therapy. And when it came down to it, I thought it could be worse: my donor could’ve died with viable organs and not be an organ donor and I wouldn’t have a heart. It really could’ve been worse.
In the meantime, I encourage you to consider what mantra helps you and is uniquely you?
I was born at the right time, in the right country with the right resources.
I was born in time when Chemotherapy was available and had been honed over 25 years to become more effective at curing childhood cancer. Then when I needed a heart transplant many years later, Cyclosporine (an anti-rejection drug) revolutionized the body’s ability to keep the transplanted organ, increasing my chances of survival.
Finally, not many want to hear this but this, but it’s the brutal truth–I was born with access to the right financial resources. I could afford health insurance and I was born in the United States, which performs 66% of the all the transplants in the world.
In many ways, I won a lottery. The odds that I slipped through the time-space continuum to make all these things happen, which have contributed to my ability to cheat death, not once or twice but three or four times is incredible.
I can’t not explain my luck other than the circumstances of my birth. I have deep gratitude for my position and realize that many others at home and around the world do not have my opportunities.
I know that time also makes a difference and I’m mindful to honor those they went before me. My paternal grandfather died at age 36 in the 1960s with his “body riddled with cancer,” per his autopsy. I suspect he had the same heredity cancer than I had (something I only discovered in the early 2000s, thanks to the Genome project and the advent of the internet). My grandfather and others like him, endured great suffering to help our medical advances.
American values teach us that if you work hard enough, your merit will be rewarded. However, I believe that luck also plays a part in making someone’s dreams come true. Well how do I get Lucky? I don’t know, and for that reason I apologize that Luck is even on my list of how I cheated death, because you can’t recreate luck. It’s unfair.
For years, I avoided internet searches and I didn’t watch any videos about Heart Transplant prior to having the surgery. That’s pretty unbelievable when you consider I read reviews just to buy new bed linens. When it came to transplant, I was too scared. This surgery is not optional and I just had to plow through it, so why get bogged down in the gory details. Ignorance is bliss.
Instead I met face-to-face with a few heart transplants recipients that I met through friends (we’re a small community). Interestingly they all approached me the same way. They told me briefly about the what’s, why’s and where’s but when it came time to really get down to the details, they said “ask me questions. Every person’s experience is different, so rather than me just go on and on, ask me your questions and I’ll tell you my experience.” Wow, this blew my mind. Especially, now that I’m on other side, I understand why they approached our talks with opened ended questions and avoided advice giving.
Everyone has their own journey. When I mentor a pre-transplant recipient, I don’t offer advice, instead I listen, I validate, I empathize and I share my feelings. Ok I will offer this advice, when in the hospital always pack an extension cord, so that your cell phone can be in the bed with you and you can reach it. Jokes asides, no one can predict how well they will do during the transplant, so all I can do is sit beside them on their journey, and perhaps my presence encourages hope that they will survive and thrive too.
Laughter really is the best medicine. During my darkest days, I find that I watch the most vapid, silliest TV shows or read trash novels. I don’t have the heart for violent movies (pun intended). But give me back-to-back episodes of “Schitt’s Creek” or “The Derry Girls” and I’m a happy woman. I need light hearted humor and laughter to offset my tears.
Prior to my transplant, I was crying a lot. I was depressed and grieving my Mum’s terminal cancer diagnosis. My brother-in-law, a funny guy, set his ring tone to a woman sobbing, so that when I called he heard tears. He said he wanted to be prepared to take my calls. I quickly stopped sobbing myself and laughed until I was out of breath. The Greeks taught us that Humor is a powerful antidote to Tragedy.
The secret to Humor in the face of adversity is that you have to actively seek it out. Be mindful to block media that takes you down and instead focus on the stuff that lifts you up. Yes, I am telling you to binge watch your favorite TV shows.
Asking for Help & Self-Care
The first time, I reached out to ask if friends could make meals felt awkward and embarrassing. I couldn’t eat restaurant food because it was too salty, so food had to be prepared at home during my quarantine. I was physically incapable of cooking, my sister & her husband both had full time jobs and a baby, my Mum had cancer and my Dad was her Caregiver. My husband worked in Austin three hours away and when he was in town over the weekend, he would make low sodium casseroles to last for the week. But if he couldn’t cook them, we had a challenging week.
When a friend said to me, “let me know how I can help you,” I wasn’t prepared. Don’t let the moment just flitter away in fear and awkwardness like me. Be prepared for a real conversation the next time this question is asked. Consider replying with, “Well, how or what do you think you’re up for?” Then be ready with a small list they can choose from: meals, babysitting, yard work, driving or attending doctor’s appointments.
Most of your loved ones may be unsure of how to help you. Each person has a desire to help, combined with some sort of skill that can be brought to the table, so take a moment to consider their best role. My neighbor adores dogs and she was invaluable to us with last minute pet sitting that turned into weeks at a time.
Asking for help is a form of self-care, but more specifically the act of “self-care” is doing things that make you feel better. Maybe it’s taking a walk in the park. Ok, well with Congestive Heart Failure it might not be a walk, so take a beautiful Sunday drive.
Me, I love to go to the movies. For those two hours, I get to escape and enter another world. My dad and I would go to the Dollar Theater once a week when I was in chemo. We snuck in candy from the nearby Walgreens. The whole ritual was fun and a diversion from my grim reality. Caregivers, just as much as the patients, must engage in self-care to combat Caregiver Fatigue or Exhaustion. The point of self-care is to actively pursue JOY. So it is my hope for you, especially during times of adversity, that you are mindful of experiencing JOY every day.
Bonus 11) Try to be “OK” with not knowing….
I’ve talked to many people facing a heart transplant and the answer they really want, that they need to hear is: Am I going to live? Am I going to be ok?
No one, not even the doctors can give a straightforward answer on your mortality. Sitting with the anxiety that your dying (that’s the only way to qualify for an organ transplant), compounded by the lack of knowledge of when you’ll get The Call for the transplant surgery, only to then consider if you’ll live through the surgery…well, this will make you lose a lot of sleep. You may experience restlessness, anxiety, bouts of crying and maybe even agitation at times. This is normal considering the extraordinary circumstances you are under as you wait for an organ transplant.
Connect with someone who’s had a transplant or is in the chemo chair next to you. If you’re on the other side then consider mentoring someone on the wait list. Your hospital social worker or nurse coordinator can make introductions. Or join a Facebook group in your area for your specific issue. When you’re facing a medical crisis, you realize that the community attending your hospital is relatively small.
You do not have to do this alone. And there will be moments when you will be in the dark and it’s feels vulnerable, annoying like info is being purposely withheld (it isn’t) and ultimately, thoughts wander to those of death and dying, another thing out of your control. Take deep breaths, cry when you need to cry, and consider what coping strategies you can use to get you through moments of anxiety. Me, I would call or text a loved one or a friend.
In closing, find comfort in both prayer and the science behind the medicine. Transplant recipients are chosen for the likeliness that will do well in the surgery. Check your transplant program’s surgical outcome rates, they should be posted everywhere. Finally, remember you are surrounded by your medical team, family, friends and supporters from all over the world rooting for you.
If you need to chat or you have questions, send me a message or email. I read every comment and reply.
Thank you for taking the time to read this blog post. I hope that in some small way it helped lessen your burden for whatever troubles you are facing.”